tag:blogger.com,1999:blog-86490802003265687852024-03-20T07:55:30.585+00:00The Social Worker Who Became DisabledAssorted thoughts on disability issues, chronic illness, social work and social policy from my perspective as a disabled person and former social workerMelhttp://www.blogger.com/profile/01974201971126211788noreply@blogger.comBlogger12125tag:blogger.com,1999:blog-8649080200326568785.post-8788449958557895132015-06-04T16:03:00.001+01:002015-06-04T16:03:55.573+01:00Union of Disabled People: My Ideas
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For
this post to make sense to any regular readers, please see <a href="http://unionofdisabledpeople.blogspot.co.uk/">this blog.</a></div>
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First
off I just want to say that I think this is an excellent idea, and could really
push forward the voice of disabled people in this country. I agree with
everything Sam Barnett-Cormack said <a href="http://unionofdisabledpeople.blogspot.co.uk/2015/05/my-thoughts-principles-for-union-of.html">here</a>,
but I'd like to take the opportunity to add some thoughts of my own.</div>
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I
want to make it clear from the start, but without rambling into too much
detail, that some of these ideas have been floating around in my head for a
while, and I feel that they could find a 'home' in this proposed organisation.
Other ideas I have developed since this union idea was proposed.</div>
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I
have been reading a lot of what has been said about this potential organisation
(although I am aware that I will have missed some stuff due to not being on
Twitter). The intention has been to be very open to ideas and wanting to build
the organisation from the ground up. From a personal perspective, this has been
great. It is allowing me to have a say and put my ideas out there, when I'm not
very well connected with the disabled community in the UK and haven't been part
of organising the campaigning which has taken place over the past few years .</div>
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However,
there seem to be an awful lot of people going 'where do I sign up?' and just
wanting it all to be there for them to join. The fact is that some people, like
me, are interested in the fundamentals of the project, and others just want
something tangible that they can sign up to (or not). There is also the issue
of it being progressively more difficult to do something on a very practical
level the more people you involve.</div>
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I think that a focus group needs to be formed. By all
means, allow anyone who wants to volunteer for it, but we need a small group of
people who are dedicated to the practical purposes of getting this thing off
the ground.</div>
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Once
the focus group is formed, publish who is in it and some contact details.
People who don't want to be as involved need some clarity as they look in from
outside. The purpose of the focus group would be to collate any ideas that are
forthcoming (the group might want to ask the disabled community again to
contribute their ideas, or perhaps survey them about possible ideas) and come up with a constitution and organisational
structure. A draft could then be published for comment by anyone, and/or a
survey could be used to determine what people think. The focus group would then
finalise the documents, and facilitate nominations for the executive committee
and open a membership list. The members would sign up and then vote in the
first exec.</div>
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As
the intention is to be very all-encompassing (an approach I wholeheartedly
support), my view is that a robust structure is required to ensure that all the
different areas of disabled life in the UK are covered. My vision for the
structure would be the following:</div>
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<li style="margin-bottom: 0; margin-top: 0; vertical-align: middle;"><span style="font-family: Calibri; font-size: 11.0pt;">An executive committee,
comprising a chairperson, secretary, treasurer and probably a membership
secretary, along with a number of portfolio posts for different areas such
as social care, transport etc.</span></li>
<li style="margin-bottom: 0; margin-top: 0; vertical-align: middle;"><span style="font-family: Calibri; font-size: 11.0pt;">A number of focus groups, one
for each area. The person holding the portfolio on the exec would
facilitate the focus group which would be comprised of 6-8 people not on
the main exec.</span></li>
<li style="margin-bottom: 0; margin-top: 0; vertical-align: middle;"><span style="font-family: Calibri; font-size: 11.0pt;">Each focus group would
research and plan projects for their area, and draw help from the wider
membership for extra people to make the projects happen. This would spread
the workload as much as possible.</span></li>
</ul>
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Possible
areas to focus on that I've thought of so far are: advocacy and peer to peer
mentoring; access to businesses and services; transport and travel; social
care; health; housing; leisure and hobbies; access to work and benefits;
education; carers; hate crime and discrimination; family life. Some of these
could possibly be combined in order to reduce the number of focus groups and
exec positions.</div>
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To
make this work on such a scale, I think we need at least 200 members.</div>
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I
would like to see the organisation providing affiliate membership for existing
DPOs and also localised groups such as access groups. This would promote
networking and information sharing between groups, and also help focus groups
plan projects that compliment and support rather than replicate work already
being done.</div>
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I
am secretary for the access group in my town, and I think local groups is a
good model for tackling access issues. So, for example, the access focus group
could, as it's first project, create a national network of access groups, with
a central resource hub online. This would mean different groups could share
ideas and knowledge. Also people wanting to start an access group in their area
could be supported to do so.</div>
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The
idea that's been floating around in my head for some time is the idea of
fulfilling lives; disabled people having the opportunity to thrive and flourish
as human beings, just as everyone else does. There is a kind of backstory to
this in terms of my experiences and things I feel are important, which I have written, but this post is going
to be far too long as it is. If anyone is interested, I can publish it as a
separate post.</div>
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I
feel this idea of fulfilling lives fits quite well into the union idea, because
it's about all aspects of life, not just benefits, work, social care and
health, which have been the major campaigning themes of the past few years.
It's no good having access to businesses if you can't leave your home, and
assistance to work is no good if employers won't give you a job. All issues
facing disabled people interact and intersect, and to truly improve the lives
of disabled people in the UK, we need to give some attention to all of them.</div>
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Some
general principles that I think could be incorporated, that came up with when I
was thinking about this vague idea of mine were:</div>
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<li lang="en-US" style="margin-bottom: 0; margin-top: 0; vertical-align: middle;"><span style="font-family: Calibri; font-size: 11.0pt;">A self empowerment movement
and mutually supportive community based on the idea that every disabled
person has the right to live a fulfilling life and that disabled people
are awesome at creating their own solutions.</span></li>
</ul>
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<li style="margin-bottom: 0; margin-top: 0; vertical-align: middle;"><span style="font-family: Calibri; font-size: 11.0pt;">Fostering the rejection of
society's ideas about us, and promoting a sense of self worth based on
being a unique human being.</span></li>
</ul>
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I
see advocacy and mentoring projects being key elements of fulfilling these
principles. I have a few other ideas floating around but they are a bit
specific for this stage.</div>
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Overall
I think that this union idea has so much potential, but we need to develop
something really tangible in order to inspire people to get involved.</div>
Melhttp://www.blogger.com/profile/01974201971126211788noreply@blogger.com3tag:blogger.com,1999:blog-8649080200326568785.post-90201043126659391852015-05-01T15:07:00.001+01:002015-05-01T15:07:50.119+01:00Don't put me in a box: reclaiming my narrative<br />
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<span style="font-style: italic;">This post is part of</span><span style="font-style: italic;"><span style="font-style: italic;"><a href="http://tinyurl.com/BADday2015"> Blogging Against Disablism Day</a></span> #BADD2015 . Please click the link to read the other posts
being published for BADD 2015.</span></div>
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<br /></div>
<a href="http://tinyurl.com/BADD2015"><img alt="Blogging Against Disablism Day, May 1st 2015" border="0" src=" https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcWO-uYIOYQcxnG87llUtBNKhdiIQk-TLw_oVZM_dlhrS3_IMc_hh-sYB6oD7LNv7dGSo2TYTLJG6psid0gyt7sJoC13CVSRm17G677Q1iSKk709wq0yHMTTaiHdGyVR9HAa7DUDYuCN0/s320/bad02.gif " title="Blogging Against Disablism Day, May 1st 2015" /></a>
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I was going to write
about something else but I had a last-minute flash of inspiration for this
post. It's something that has been forming as an idea for a while, but I didn't
think until today about publishing it for BADD.</div>
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Some time ago, I
came across this <a href="http://www.ted.com/talks/sue_austin_deep_sea_diving_in_a_wheelchair?language=en">TED talk</a>
by Sue Austin, a disabled artist. I was really taken by much of what she said
about narrative, and I really related to her experiences.</div>
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Society imposes
narratives on people all the time. As disabled people, we are no different. We
have many narratives imposed on us, many of them negative.</div>
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Last year, I went on
a short break with my husband to Snowdonia. "Your life must be hell!"
exclaimed the B&B owner, on learning that I was chronically ill (I wasn't
able to think of a way to not tell him why I was using a wheelchair). I tried
to tell him that, no, my life was not hell, thanks very much, but he wasn't
really having any of it. He'd made up his mind, and it took 3 days of seeing me
not living the life from hell (I was on holiday after all!) for him
to unmake it. "You actually seem pretty happy" he said on the last
day. Yes, yes I am, and you know that now that you actually know me, I thought.</div>
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You see, it isn't
that I don't think anyone's life can be hell when they're ill. But mine isn't,
and I get just a bit fed up when people assume that my life must be rubbish
because I'm disabled, especially when they don't know anything else about me.
My life, just like everyone else's, is a mixture of experiences; good, bad,
bittersweet and everything in between.</div>
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It's not just
assumptions about my life either. People make assumptions about my abilities,
when they know nothing about them. Last year I attended the AGM of a local
group who I'd recently become a member of. They were looking for people for the
committee, and I was approached. I made the mistake, yet again, of mentioning
that I'm chronically ill. The reaction was, 'I'll leave you alone then.'
Noooooooooo! I thought. An opportunity to participate in my local community
slipping through my fingers<span style="mso-spacerun: yes;"> </span>because of
an assumption that I can't do anything because I'm ill. Fortunately, I spoke to
other people and I've joined the committee anyway.</div>
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People make these
assumptions because society tells us particular stories about disabled people.
Disability narrative is full of pity, tragedy and fear. We are told that we are
useless, worthless and a burden on society. Having supportive people in my life
and being trained as a social worker to see people's strengths didn't stop me
from absorbing this narrative for a while.</div>
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But no more. Slowly,
I have realised that I don't have to let outside forces tell my story. I
shouldn't let them, because that story isn't true, especially now. Yes, I was
unhappy when I was first ill. It was a loss, I grieved. But when I came out the
other side of that grief, I realised that the rest of the world hadn't
travelled with me. I was dismayed, outraged at times, to discover that other
people saw me so differently to how I saw myself. It was a source of
frustration for a while, until I realised that actually, I didn't have to
listen to that story that was being told about me. I could tell my own story.
I've been telling it to myself for a while, and it has really empowered me, and
helped me to take back my confidence and self worth. Today I'm sharing
that story with you.</div>
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My name is Melanie.
I am a wife, sister, daughter, friend. I write. I create. I cook. I have
challenges. I have fun. I have suffered losses. I experience many emotions, but
mainly I am happy. I am living with a chronic illness. I adore being outside in
the sunshine. I make mistakes. I love eating good food. I am disabled. I enjoy
good conversation. I am doing my best.</div>
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<br /></div>
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Look at me.</div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpUF11qp45fAmFTQtq5U31qoHwVUTdDlBo5sY0igxjAneMrQp8wc31kZgXi3emcb_DpVfcAZBee_cD0-6wIO246MJIx83O5efz-sxI5Cmwwo4FrSFDFYZkX4zHXQMSTI150YaPrOat_qU/s1600/SMALL_0687.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpUF11qp45fAmFTQtq5U31qoHwVUTdDlBo5sY0igxjAneMrQp8wc31kZgXi3emcb_DpVfcAZBee_cD0-6wIO246MJIx83O5efz-sxI5Cmwwo4FrSFDFYZkX4zHXQMSTI150YaPrOat_qU/s1600/SMALL_0687.jpg" height="320" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Photo credit: Lydia Brockless. Photo description: the picture shows woodland with bare trees, blue sky and sunshine. I am sitting in my wheelchair in front of a tree, with my arms flung back and my face towards the sky.</td></tr>
</tbody></table>
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I am thriving.</div>
Melhttp://www.blogger.com/profile/01974201971126211788noreply@blogger.com2tag:blogger.com,1999:blog-8649080200326568785.post-21626224360465116892015-03-20T20:59:00.000+00:002015-03-20T20:59:20.905+00:00The Great Cure Debate
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As I said in my last
post, this started out as a tangent and evolved into it's own thing. It's
something I started thinking about because a lot of awareness campaigns base
themselves around the idea of the need for a cure, yet many proponents of the
social model believe that cure isn't necessary, and that most of the problems
that come with being disabled would be solved if disabled people had full
equality. </div>
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This issue is one
that has potential to create huge divisions within the disabled community, but
I don't believe it has to be this way. I think it is possible to make room for
both, even though the two ideas seem to be in direct conflict with each other.
In this post I will be exploring the debate, and I'll also be examining my own
thoughts and feelings about the ideas of cure and equality for disabled people.</div>
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There are 3 main
arguments that are usually used to justify the desire for a cure. Firstly, that
disabled people are unhappy with their lives, and would be happier if they were
non-disabled. Secondly, that disabled people suffer terribly as a result of their
impairment. Thirdly, that disabled people are a drain or burden on society.</div>
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The first 2
arguments are commonly cited not just by non disabled people, but by disabled
people themselves, although usually only if their impairment is acquired. I
have noticed that most people I have come across who were born disabled do not
desire a cure. The third argument is most often cited by non-disabled people,
and I don't think I would be the first person to say that it is deeply
offensive to most of us disabled people.</div>
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<span lang="en-GB">The
arguments against cure are firstly that disabled people </span><a href="http://www.bbc.co.uk/news/magazine-27554754?ocid=socialflow_twitter"><span lang="en-US">are not unhappy</span></a><span lang="en-GB"> and also not necessarily<span style="mso-spacerun: yes;">
</span>suffering. Secondly, that any unhappiness or suffering are generally a
result of their experience of inequality (e.g. lack of access, workplace
discrimination, hate crime). Thirdly, that disabled people are not a drain on
society, and equality would give them even more opportunity to contribute (e.g.
an end to discrimination would see more disabled people in work, better access
would see disabled people able to fully participate in politics, culture and
the arts).</span></div>
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As you can probably
now see, it is easy to think that it's a case of cure vs equality. That's what
it seemed like to me when I first started reading about it, especially since
disabled people themselves seem to fall into either one of two camps.</div>
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<br /></div>
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In the first, are
those who do not desire a cure. They either see their impairment as a blessing,
are able to live happily with it, or don't feel any kind of loss because they
were born with their impairment. In the second, are those who desire a cure because
they feel they are suffering as a direct result of their impairment, those who
see others suffering as a result of the same impairment, and those who feel
they should want a cure due to pressure from wider society making them feel as
if they are a burden. Those who suffer may hold onto the hope for a cure and
this might help them cope emotionally with the impact of their impairment.</div>
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<div lang="en-US" style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
Since
starting to read disability blogs, I have constantly been challenged by the
idea that disability doesn't need to be cured, and that our lives could be
vastly improved simply with equality.<span style="mso-spacerun: yes;"> </span>As
a disabled person whose impairment is caused by illness, the idea of not
needing a cure can be a really difficult concept to handle. But oddly, it
matches up with my lived experience. I have learnt that I can live a fulfilling
life anyway, and it largely doesn't matter that I now live in an impaired body.</div>
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<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<span lang="en-US">Yet,
I remain personally conflicted. I am uncomfortable with the last sentence of
the above paragraph, because I know many would see me as a traitor to the ME
and wider chronic illness community.<span style="mso-spacerun: yes;"> </span>But
I also feel uncomfortable saying that if a cure became available tomorrow, I'd
accept it. Saying I would accept a cure makes me feel like a traitor to the
wider disabled community, who are desperate for non-disabled people to
understand that a lot of the suffering disabled people experience is as a
result of living in a society which does not give us equal rights. Not, as many
non-disabled people assume, as a direct result of the impairment we live with. </span><span lang="en-GB">To a certain extent I identify with both sides, and this post is
partly a result of my attempt to try and reconcile my personal feelings on the
matter.</span></div>
<div lang="en-US" style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div lang="en-US" style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
I am
painfully aware that, especially amongst the ME and chronic illness community,
there are those who would argue that there is a difference between being sick
and disabled, and being well and disabled. Having read a little about lots of
different impairments, I would say that in the case of the cure debate, there
is little point in making this distinction.</div>
<div lang="en-US" style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<span lang="en-US">Spinal
injury is an example of an impairment that was compared to ME during a Facebook
discussion I saw. The person with ME was saying that spinal cord injury (SCI)
is not as 'bad' as ME because people with SCI can still do lots of stuff that
people with ME can't. But people with SCI can experience debilitating pain,
just like people with ME. There are also people with spinal injuries <span style="mso-spacerun: yes;"></span></span><a href="http://www.huffingtonpost.com/2013/10/04/racrachelle-friedmanhelle-friedman_n_4044820.html"><span lang="en-GB">who feel they are suffering and wish to be cured</span></a><span lang="en-GB">.<span style="mso-spacerun: yes;"> </span>Equally, there are
probably people living happily and pain-free with an SCI, and there are people
like me, who are living well and positively with chronic illness. There are
people on both sides of the debate, no matter what their impairment is.</span></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<span lang="en-GB">The
other thing is that people with SCI face probably as many barriers to
participation in society as some people with ME. Whilst someone with SCI can
stay up all day without resting, and spend as much time as they want out and
about, there are far more places they cannot go than someone like me who is
able to get out of her wheelchair and walk a bit, yet cannot go out much more
than twice a week. </span><span lang="en-US">To say that one impairment is worse
than another creates needless division, and means that people do not </span><span lang="en-GB">recognise</span><span lang="en-US"> one another's suffering, whether
it is caused directly by impairment or as a result of inequality. The reality
is that the majority of disabled people experience both social exclusion and
problems related directly to their impairment.</span></div>
<div lang="en-US" style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<span lang="en-GB">Many
people in the chronic illness world desire a cure, whereas many disabled people
with other impairments (especially those who were born with their impairment),
do not. Interestingly though, there are chronically ill people who identify
much more with the wider disabled community in terms of recognising and
challenging disablism. </span><span lang="en-US">There are always exception to
the rules we create, always people who will inhabit a space outside the box we
would like them to fit into. The disability community is diverse, and we all
have different ideas about what is good for us. But I think we could unite
around the common cause of equality, if we could but see how it would benefit
everyone, whether they desire a cure or not.</span></div>
<div lang="en-US" style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<span lang="en-GB">When
it comes to equality, it actually matters very little what impairment a person
has, or what they think of their situation. Equality could benefit any disabled
person. The main reason that I am able to have a fulfilling life is that I have
a few things available to me that other disabled people do not always have. </span><span lang="en-US">Support and loyalty from family and friends; access to equipment
such as my <a href="http://thesocialworkerwhobecamedisabled.blogspot.co.uk/2014/03/international-wheelchair-day-2014-what.html">wheelchair</a>; availability of information to help me manage my
condition; peer support from the internet; wheelchair access to essential
places like my GP surgery and pharmacy; wheelchair access to leisure
activities; disability benefits. My point here is that all these things are
factors external to my condition. To me, they have essentially solved a large
number of the problems caused by my illness. I believe that in a large number
of cases, the suffering people experience could be at least partially
alleviated by external support, rather than needing a cure. Equality would mean
that all disabled people would have access to the things they need to live as
fulfilling life as possible with their impairment.</span></div>
<div lang="en-US" style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<span lang="en-US">Equality
wouldn't just include better wheelchair access or improved attitudes, but
access to treatments such as pain relief, operations and appropriate medical
advice, that alleviate those aspects of impairments that have a direct impact
on quality of life. Believe it or not, many disabled people do not have access
to all the medical care and management advice that would </span><span lang="en-GB">maximise</span><span lang="en-US"> their quality of life, and this
could be considered disablist.</span></div>
<div lang="en-US" style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div lang="en-US" style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
The
stigma that surrounds many conditions means that some people don't seek help at
all. They become disabled by not having access to medical advice, treatments,
aids and adaptations that could improve their lives. Removing this stigma is
about changing attitudes, not finding a cure for the impairment.</div>
<div lang="en-US" style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<span lang="en-US">Another
reason for prioritising equality, in my opinion, is that it is actually more
achievable than cure, at least in a practical sense. Even with huge amounts of
research, many conditions, not just ME, are still incurable. In this </span><a href="http://disability-studies.leeds.ac.uk/files/library/Oliver-PROFLEC.pdf"><span lang="en-GB">lecture</span></a><span lang="en-GB"></span><span lang="en-US">, Michael Oliver gives the example of The
Spinal Injuries Association, who, in 1986, claimed that a cure would be
possible in just 5 years, if they could raise enough money. Almost 30 years on,
there still isn't a cure for spinal injuries. Only very recent research
findings have produced 2 examples of the possibilities of curing spinal injury
(see </span><a href="http://www.bbc.co.uk/news/health-29645760"><span lang="en-US">here</span></a><span lang="en-US"> and </span><a href="http://www.bbc.co.uk/news/health-30254698"><span lang="en-GB">here</span></a><span lang="en-GB">).</span></div>
<div lang="en-US" style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<span lang="en-US">In
contrast, external solutions have been developed far more quickly, in the form
of better wheelchairs and even </span><a href="http://www.sciencedaily.com/releases/2012/10/121030101342.htm"><span lang="en-GB">powered exoskeletons</span></a><span lang="en-GB">. Generally speaking, developments in assistive technology and
improvements to equipment, aids and adaptations appear to have moved far more
quickly than the search for a cure. They are also more generic (like touch
screen or </span><a href="http://techcrunch.com/2014/09/05/smart-accessibility/"><span lang="en-GB">'smart home' technology</span></a><span lang="en-GB">), meaning the same piece of equipment could help people with
several different impairments. Cures would almost always need to be
impairment-specific.</span></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<span lang="en-GB">I'm
not suggesting that the search for a cure should not continue. </span><span lang="en-US">Research is not just about cure. Research helps doctors and patients
to understand and manage conditions effectively. It can help to ensure correct
diagnosis and develop treatments to relieve symptoms. I believe that these
things are also crucial for good quality of life, and that not providing them
when they exist (or could realistically exist) is a form of disablism.</span></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
Equally though,
wheelchairs exist, assistive technology exists, pain relief exists; <span style="font-weight: bold;">right now</span>. They just need to be made available
to <span style="font-weight: bold;">all</span> those who could benefit from them.
Research being done now may only benefit people in 10, 20 or 30 years' time but
I believe passionately that people's lives could be better now.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div lang="en-US" style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
Medical
advances are keeping more disabled people alive. Therefore those same medics
and scientists have a responsibility to ensure that the lives they save are as
fulfilling and as comfortable as possible.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
Finally, I would
like to address the argument that cure would negate the need for equality. I
believe this line of thinking is profoundly dangerous for humanity. If we were
to find cures for impairments, not all cures would come at once. This would
leave a smaller and smaller group of disabled people, potentially subject to
extra stigma because they cannot be cured at the current time. This would leave
them vulnerable to further suffering.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
More importantly,
prioritising cure sends the message that difference is unacceptable, and
compounds the idea that we should all have perfect bodies. It is a fact of life
that human beings are diverse. It is a fact of life that no one's body works
absolutely perfectly. Everyone has some ailment or other, even if it's just hay
fever or an ingrowing toenail.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
The other thing is
that we wouldn't expect other minority groups to be 'cured' as a 'solution' to
their suffering. Just think about it for a second, I'm not going to say any
more!</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div lang="en-US" style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
In
conclusion, my view is that we shouldn't focus on cure or equality as separate
and conflicting aims. This creates a space for working towards all the things
that will make life better for all disabled people; removing stigma and
prejudice; equal access to public spaces, education, work and healthcare;
providing equipment and adaptations that maximise quality of life; as well as
pushing for medical research that may produce a cure, but at the very least
should result in better medical advice and treatment.</div>
<div lang="en-US" style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div lang="en-US" style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
Further
reading:</div>
<div lang="en-US" style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<a href="http://thatcrazycrippledchick.blogspot.co.uk/2013/10/screw-cure-i-want-equality-letter-to.html">http://thatcrazycrippledchick.blogspot.co.uk/2013/10/screw-cure-i-want-equality-letter-to.html</a></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<a href="http://wordsiwheelby.com/2013/08/complexities-of-cures/">http://wordsiwheelby.com/2013/08/complexities-of-cures/</a></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<a href="http://wordsiwheelby.com/2013/10/curing-disability-should-not-outweigh-equality/">http://wordsiwheelby.com/2013/10/curing-disability-should-not-outweigh-equality/</a>
The comments on this article make some good points too.</div>
Melhttp://www.blogger.com/profile/01974201971126211788noreply@blogger.com0tag:blogger.com,1999:blog-8649080200326568785.post-65608538649805810372014-05-15T15:13:00.000+01:002014-08-22T20:54:38.269+01:00ME Awareness Month: Less Awareness, More Acceptance<br />
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
12th May was <a href="http://www.may12th.org/">ME Awareness Day</a>,
part of ME Awareness Month. 12th May is also an awareness day for Fibromyalgia
(FM) and Multiple Chemical Sensitivities (MCS). If you would like to know more,
click the link above or see one of my previous posts <a href="http://thesocialworkerwhobecamedisabled.blogspot.co.uk/2013/10/mecfs-places-you-can-find-out-about-my.html">here</a>.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
I was intending to
publish this on ME Awareness Day, but I ended up going off on a tangent which
I've now turned into a whole other post (coming soon), meaning that I ran out
of time.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<span lang="en-GB">When
I first became ill with ME, I thought the idea of an awareness day was great.
There is a lot of misunderstanding about ME (even among health professionals),
and a lot of people don't know how serious it can be. However, in the last year
or so my personal outlook has changed significantly, and I've also read a
couple of articles (links later on) that have challenged me. This combination
has lead to me question whether I really feel comfortable with awareness
raising. I'd like to suggest that <a href="http://wordsiwheelby.com/2014/01/international-day-of-acceptance/">acceptance would be a better alternative</a></span><span lang="en-US"></span><a href="http://wordsiwheelby.com/2014/01/international-day-of-acceptance/"><span lang="en-GB"></span></a><span lang="en-GB">, and one that I could (and do) wholeheartedly support.</span></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
One of the problems
with awareness-raising is that it aims to induce pity in those on the receiving
end. <a href="http://blobolobolob.blogspot.co.uk/2014_04_01_archive.html">Diary of a Goldfish</a> <a href="http://blobolobolob.blogspot.co.uk/2014_04_01_archive.html"><span lang="en-US"></span></a><span lang="en-GB">eloquently points out that this perpetuates personal tragedy model
of disability. This in turn reinforces the idea that quality of life for people
living with impairments must be terrible. </span>
</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
Of course, some
disabled people consider that their lives are terrible as a direct result of
their impairment (as opposed to not having the same rights and opportunities as
non-disabled people). But I'm not one of them, so awareness campaigns tend to
make me very uncomfortable because they do not reflect the reality of my life.
Most of the time I do not suffer and I have a good quality of life. I consider
this to be a result of the tools and resources I have available to me which
enable me to manage my condition well and overcome a lot of the difficulties it
causes.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<span lang="en-GB">Other
problems with awareness-raising include <a href="http://blobolobolob.blogspot.co.uk/2014_04_01_archive.html">pitting different impairments against each other</a></span><span lang="en-US"> and the fact that <a href="http://gracequantock.com/why-i-dont-support-awareness-raising/">not everyone can be expected</a> to be aware of
every illness and medical condition</span><span lang="en-GB">. This is especially true when awareness days, weeks and months all
seem to happen at the same time. Via social media, I have discovered that there is an awareness day for lupus this month, and it is also Lyme Disease
Awareness Month. A quick google turned up a whole load more.</span></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
I also wonder about
the effectiveness of awareness-raising in addressing the problems that people
with various impairments face. Google tells me that awareness is simply
'knowledge or perception of a situation or fact'. Awareness simply means people
know of something and maybe know about the problems it causes. It doesn't mean
that they will do anything about it. I get the impression that most people who
raise awareness want something to be done. Whilst it might generate much-needed
charitable donations (not a bad thing in and of itself), awareness won't
necessarily change people's attitudes.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div lang="en-US" style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
It is
really, really hard for people to understand something like ME. Even the
nicest, most empathetic and accepting people I know, do not fully understand
what it's like for me. But I am ok with that. I am ok with that because they
accept me just as I am. They accept my experience as I tell it, they accept my
limitations and my access needs without question.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
Acceptance would be
a huge attitude shift. It would not require the general public to understand
complex medical conditions. It would benefit all disabled people, no matter
what they think about their quality of life and no matter what their impairment
is. It would mean that everyone would accept their (our) reality at face value,
whatever it happens to be.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<span style="font-style: italic;">Although I would prefer acceptance rather than
awareness, I would like to state that I have no issue whatsoever with the
fundraising efforts that are part of ME Awareness. Fundraising is important for
many, many conditions, and it isn't just about research. Charities such as the
ME Association and Action for ME also provide emotional support and advocacy,
which in my opinion, are just as important.</span><br />
<br />
<span style="font-style: italic;">EDIT: removed reference to Autism Awareness Day because it isn't in May, it's in April. </span></div>
Melhttp://www.blogger.com/profile/01974201971126211788noreply@blogger.com0tag:blogger.com,1999:blog-8649080200326568785.post-33663740300391839642014-05-02T17:57:00.000+01:002014-08-22T20:52:13.590+01:00BADD 2014: Are Social Workers Part of the Problem?<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<span style="font-style: italic;">This post is part of <a href="http://tinyurl.com/BADday2014">Blogging Against Disablism Day</a> (BADD).
Please click the link to read the other posts being published for BADD 2014.
The scope of social work varies around the world; please note that I am writing
from a UK perspective.</span></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<a href="http://tinyurl.com/BADD2014"><img alt="Blogging Against Disablism Day, May 1st 2014" border="0" src=" https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcWO-uYIOYQcxnG87llUtBNKhdiIQk-TLw_oVZM_dlhrS3_IMc_hh-sYB6oD7LNv7dGSo2TYTLJG6psid0gyt7sJoC13CVSRm17G677Q1iSKk709wq0yHMTTaiHdGyVR9HAa7DUDYuCN0/s320/bad02.gif " title="Blogging Against Disablism Day, May 1st 2014" /></a>
<br />
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
When I was a first
year social work student, I studied a module entitled 'Values, Ethics and
Empowering Practice'. For me, this was one of the most fascinating and engaging
topics of the whole course. It opened my eyes to things I had never considered,
gave words to concepts I recognised but had previously not found the words to
express, and heavily influenced my personal attitudes.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
The module also made
me uncomfortable at times. During the course I realised my white, middle class
privilege for the first time, and felt immediately guilty for it. I realised
that racism isn't dead (yes, I was quite naïve aged 19). Lastly, I was confronted
with the idea that sometimes, social workers are part of the problem.
Sometimes, they contribute to the oppression of minority groups, instead of
working against it.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
Looking back at my
old lecture notes, the first slide of the lecture on disablism (given by
Professor Lena Dominelli) clearly states that social workers have contributed
to the oppression of disabled people. I also noted how disillusioned with
social workers Michael Oliver (a leading disabled academic) seemed in his book<span style="font-style: italic;"> The Politics of Disablement </span>(1990).<span style="font-style: italic;"> </span>This has stuck in my mind ever since. I felt
intense discomfort at the idea that I would be seen as a problem by disabled
people. I was being taught that I was supposed to be part of the solution.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
This discomfort only
continued when I became disabled myself and started reading disability blogs,
some of which have contained stories of negative experiences of social workers
and social services.<span style="mso-spacerun: yes;"> </span>What was I supposed
to think now? I felt like a fraud identifying as disabled, when really I was on
what appeared to be an opposing 'side' (despite the fact that I was no longer
working at this point). I knew that those experiences of other disabled people
weren't right, and I longed for them to have experience of good social work
practice. In an ideal world, social workers and disabled people should be on
the same 'side'.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
I had hoped to write
a post exploring in detail how and why social workers contribute to disablism,
however it became clear that if I were to fully explore each idea it would end
up being a series of posts (which I don't have the spoons to write) rather than
one. So I have done my best to summarise everything instead.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
Let's start with how
things should be. Here are some things I was taught in university that I feel
are relevant to social work with disabled people. These are from my memory of
what was said at university, unless otherwise indicated.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<span style="font-weight: bold;">Self-determination</span> This is the idea that the
person, not the social worker, should be making decisions and choices about the
person's life (Biesteck 1961)</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<span style="font-weight: bold;">Empowerment </span>The idea that the social worker's
interaction with the person should result in the person having more power over
their life. </div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<span style="font-weight: bold;">The social model of disability </span>The idea,
developed by disabled people, that people with impairments are disabled by a
society that is not structured to be fully inclusive of them.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<span style="font-weight: bold;">Seeing the person in context </span>During training,
we were always told that we must view people we worked with within their social
context. When working with disabled people, this means acknowledging the
oppression they face in wider society. </div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<span style="font-weight: bold;">Addressing structural inequalities </span>Lena
Dominelli's view was that the role of the social worker was not just to assist
people on an individual level, but also to challenge the structural
inequalities that impact on the people social workers work with. She felt that
social work could not be truly effective without this latter element.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<span style="font-weight: bold;">Holistic assessment </span>A social workers'
assessment should consider all aspects of a person's life, not just tasks of
daily living such as eating, washing and dressing. An assessment should also
include discussion of working life, leisure activities and hobbies, religious
or spiritual practice, family life, social life and relationships. To a certain
extent, this is represented in current social care guidance.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<span style="font-weight: bold;">The person is the expert in their situation.</span></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<span style="font-weight: bold;">Needs-led assessment </span>Current social care
guidance states that assessments should be based on what the person needs
rather than the resources available.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<span style="font-weight: bold;">Partnership approach </span>The social work
relationship should resemble a partnership in which the social worker and
person work together to overcome the problems and barriers the person faces
(French and Swain, 2002).</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<span style="font-weight: bold;">Anti-oppressive/anti-discriminatory practice</span>
Being aware of the oppression and discrimination that people face, and ensuring
that social workers' own actions do not condone or contribute to this
experience (Thompson, 2002).</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin-left: .375in; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
It is important to
note here that the values of social work haven't evolved in a vacuum. They are
a response to the campaigning of the marginalised groups with which social
workers are working.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
Whilst in the 1950s,
social work was heavily influenced by psychoanalysis, the social movements of
the 1960s and beyond have gradually pushed social work towards the ideals of
social justice and the idea that social workers should be enabling and empowering
people, rather than being an expert who is prescribing solutions to people's
problems. Moreover, social workers should be actively addressing their own
contribution to the oppression of marginalised groups.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
So where does it all
go wrong? I'm going to suggest that there are several ways in which good social
work practice is compromised:</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<span style="font-weight: bold;">Lack of resources</span> This has always been a
problem, and in the recent economic and political climate has only got worse.
Social workers are not always able to put in place what the person needs
(and/or wants) because the funding just isn't there. Additionally, social workers
themselves are viewed as a resource. Social work time costs money, so there is pressure to manage a higher
caseload (in order to employ fewer social workers), which means less time spent with each person. The net result of this
is that social workers are not able to really get to know people, nor do they
have sufficient time to reflect on their practice, meaning they will be more
likely to inadvertently contribute to oppression, and less likely to assist the
person to achieve their aspirations.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<span style="font-weight: bold;">The eternal tension between what social work wants to
be and the role that the government have prescribed </span>I have set out above
the ideals that social work as a profession aspires to. However, this is often
at odds with the ideology of central government, whose policies social workers
have to implement and who make the laws that define the social work role.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<span style="font-weight: bold;">The influence of wider society on the social worker</span>
Society at large still subscribes to the <a href="http://en.wikipedia.org/wiki/Medical_model_of_disability">medical model</a>
and the <a href="http://whatsortsofpeople.wordpress.com/2008/08/15/the-personal-tragedy-theory-of-disability-mike-oliver-and-the-social-model/">personal tragedy model</a>.
If social workers are not careful, they can internalise these ideas and this
can influence their practice.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<span style="font-weight: bold;">The watering down of social work values</span> Lena
Dominelli in particular has picked up on the issue of empowerment basically not
really being empowerment at all. She uses the example of complaints procedures
(against individual social workers) as appearing to empower individuals but
actually making little difference because decisions about the way services are
designed and delivered are made by management (Dominelli, 2000).</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<span style="font-weight: bold;">Lack of professional voice </span>If social workers
are to address structural inequalities, they need to speak out against these
with a collective voice. Unfortunately, social workers have little respect in
wider society and their professional opinions are rarely valued by those in
power.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<span style="font-weight: bold;">Allowing knowledge of the available resources to
influence their assessment.</span></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<span style="font-weight: bold;">Imbalance of power </span>Oliver (1990)<span style="font-weight: bold;"> </span>states that social workers, as professionals,
hold knowledge and information about what is available. This means they hold
power over a person who does not know these things. They also have a certain
degree of power in terms of gatekeeping, as they are the ones who determine
what the person needs.<span style="mso-spacerun: yes;"> </span>Oliver (1990)
also points out that professionals rely on disabled people in order to have a
job role, so have a vested interest in keeping people dependent on services.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<span style="font-weight: bold;">Conflicting roles</span> The role of gatekeeper is in
direct conflict with the idea of social workers empowering individuals.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<span style="font-weight: bold;">Production line-type processes and tick boxes</span>
When assessment structures are reduced to ticking boxes and following a
process, social workers may fail to engage fully with the person's aspirations,
instead concentrating on meeting basic needs.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
As you can probably
see, a lot of the causes of disablism in social work are wider issues that are
often beyond the control of individual social workers. However, social workers
have a responsibility to make the changes that are within their control.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
So, how can we work
towards better social work with and for disabled people?</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
My suggestions to
social workers are :</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<ul style="direction: ltr; margin-bottom: 0in; margin-left: .375in; margin-top: 0in; unicode-bidi: embed;" type="disc">
<li style="margin-bottom: 0; margin-top: 0; vertical-align: middle;"><span style="font-family: Calibri; font-size: 11.0pt;">Defend your professional
values and be vigilant as to where and how they can be compromised. Do
your best to stay true to what you were taught at university, where social
workers themselves define what social work should be.</span></li>
<li style="margin-bottom: 0; margin-top: 0; vertical-align: middle;"><span style="font-family: Calibri; font-size: 11.0pt;">Be aware of and challenge
disablism wherever possible, including within the organisation for whom
you work.</span></li>
</ul>
<ul style="direction: ltr; margin-bottom: 0in; margin-left: .375in; margin-top: 0in; unicode-bidi: embed;" type="disc">
<li style="margin-bottom: 0; margin-top: 0; vertical-align: middle;"><span style="font-family: Calibri; font-size: 11.0pt;">Remember that the interaction
with the person is the one thing you truly do have control over. Respect
and acknowledge the person's aspirations and oppression, even if you can't
see a way to do anything about them. If you are unable to provide
something, explain this politely, respectfully and giving the reasons.
This might seem obvious, but when I mentioned bad experiences that
disabled people had, insensitive comments about lack of resources and
disabled people's aspirations for their lives, was one of the things I was
referring to.</span></li>
</ul>
<ul style="direction: ltr; margin-bottom: 0in; margin-left: .375in; margin-top: 0in; unicode-bidi: embed;" type="disc">
<li style="margin-bottom: 0; margin-top: 0; vertical-align: middle;"><span style="font-family: Calibri; font-size: 11.0pt;">Be willing to learn from
disabled people.</span></li>
<li style="margin-bottom: 0; margin-top: 0; vertical-align: middle;"><span style="font-family: Calibri; font-size: 11.0pt;">Campaign alongside disabled
people.</span></li>
</ul>
<div style="font-family: Calibri; font-size: 11.0pt; margin-left: .375in; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
My suggestions to
disabled people:</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<ul style="direction: ltr; margin-bottom: 0in; margin-left: .375in; margin-top: 0in; unicode-bidi: embed;" type="disc">
<li style="margin-bottom: 0; margin-top: 0; vertical-align: middle;"><span style="font-family: Calibri; font-size: 11.0pt;">Don't be afraid to challenge
your social worker. Please do it respectfully, but don't remain silent if
something isn't right.</span></li>
<li style="margin-bottom: 0; margin-top: 0; vertical-align: middle;"><span style="font-family: Calibri; font-size: 11.0pt;">Recognise that there are some
things which are outside of your social worker's control. </span></li>
<li style="margin-bottom: 0; margin-top: 0; vertical-align: middle;"><span style="font-family: Calibri; font-size: 11.0pt;">Part of internalising
society's attitudes towards you is accepting the idea that other people
know what is best for you; remember that you are the expert in your own
situation. </span></li>
</ul>
<ul style="direction: ltr; margin-bottom: 0in; margin-left: .375in; margin-top: 0in; unicode-bidi: embed;" type="disc">
<li style="margin-bottom: 0; margin-top: 0; vertical-align: middle;"><span style="font-family: Calibri; font-size: 11.0pt;">Keep coming up with your own
solutions and suggest them to your social worker.</span></li>
</ul>
<ul style="direction: ltr; margin-bottom: 0in; margin-left: .375in; margin-top: 0in; unicode-bidi: embed;" type="disc">
<li style="margin-bottom: 0; margin-top: 0; vertical-align: middle;"><span style="font-family: Calibri; font-size: 11.0pt;">See your social worker as a
resource. Ask questions, obtain information. Being an active participant
in the interaction makes it implicit that you expect a partnership
approach.</span></li>
<li style="margin-bottom: 0; margin-top: 0; vertical-align: middle;"><span style="font-family: Calibri; font-size: 11.0pt;">Keep campaigning for your
right to better social care.</span></li>
</ul>
<div style="font-family: Calibri; font-size: 11.0pt; margin-left: .375in; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
I hope this will
give social workers an opportunity to reflect on their own practice. I also
hope that it gives disabled people some insight into what a good social worker
looks like. I believe that social workers and disabled people can work together
to address the structural inequalities that affect both disabled people and the
ability of social workers to effectively empower them.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<span style="font-weight: bold;">References</span></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
Biestek, F (1961) <span style="font-style: italic;">The Casework Relationship</span> London: Allen and
Unwin</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
Dominelli, L (2000) <span style="font-style: italic;">Empowerment: Help or Hindrance in Professional
Relationships</span> in Stepney, P and Ford, D (eds)<span style="mso-spacerun: yes;"> </span><span style="font-style: italic;">Social Work
Models, Methods and Theories. </span>Lyme Regis: Russell House Publishing </div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
French, S and Swain,
J (2002) <span style="font-style: italic;">The Perspective of the Disabled
People's Movement </span>in Davies, M (2002) <span style="font-style: italic;">The
Blackwell Companion to Social Work </span>Oxford: Blackwell Publishing</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
Thompson, N (2002) <span style="font-style: italic;">Anti-Discriminatory Practice </span>in Davies, M
(2002) <span style="font-style: italic;">The Blackwell Companion to Social Work </span>Oxford:
Blackwell Publishing</div>
Melhttp://www.blogger.com/profile/01974201971126211788noreply@blogger.com2tag:blogger.com,1999:blog-8649080200326568785.post-73017683845150638002014-03-01T16:52:00.000+00:002014-08-22T20:49:56.584+01:00International Wheelchair Day 2014: What a Wheelchair Means to Me<br />
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
Today is <a href="http://internationalwheelchairday.com/">International Wheelchair Day</a>.
It is a day to celebrate the wonderful invention that is the wheelchair, and
the freedom it brings to so many people. It is also a day to think of those
whose lives could be enhanced by the provision of a wheelchair, or a better
wheelchair, but who, for various reasons, do not currently have access to one.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
Various events are
going on around the world, so take a look at the website above to see if there
is something happening near you.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in; text-align: center;">
<span style="font-weight: bold;">*****</span></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
Early on in my
illness, when I could walk further than I can now, I began to think about
wheelchairs. Even though I could still walk 100-200m, my restricted range of
mobility was beginning to restrict what I could do. I badly wanted to go to <a href="http://www.taize.fr/">Taize</a> and <a href="http://www.greenbelt.org.uk/">Greenbelt</a> in summer
2011, and I realised that if I had a wheelchair, I could.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
I only began to
doubt myself when I thought about what other people might think. Would they
think I was giving up? Would it make life awkward and difficult? Would
strangers think I was faking when I got out and walked completely normally?
Would people treat me differently? I'd already heard about <a href="http://interactions.acm.org/archive/view/july-august-2013/does-he-take-sugar">'Does s/he take sugar?'</a>
when I was training to be a social worker.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
I looked at a lot of
wheelchairs online. I began to consider my options for getting one just so I
could do my 2 trips away over the summer. It turned out that the easiest and
cheapest way would be to borrow one from the Red Cross (you can borrow one for free,
but they like a donation).<span style="mso-spacerun: yes;"> </span>I really
didn’t like the look of the horrible red and grey chairs on their website, but
they lent me a metallic purple one with a really comfy backrest. I thought only
expensive wheelchairs could look cool. One person even complimented me on the
wheelchair during the trip, and was really surprised when I told her it was on
loan from the Red Cross.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
My husband and I
picked up the chair a couple of days before the trip, so when it turned out to
be lovely evening, he took me for a walk down the road. It felt better than I
had ever imagined. The sensation of being pushed in a wheelchair took some
getting used to, but I felt free. Free and happy and so grateful just to be
basking in the evening sun.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
The wheelchair I
borrowed for Greenbelt wasn't as nice, but it still meant I could go and enjoy
the festival. A month later, life was getting so awkward <span style="font-style: italic;">without</span> a wheelchair, I started hiring one.
Turns out, when you just get by without something, you don't actually know how
much you can benefit from it until you actually have it. This has turned out to
be true with several other things I now have to help make life easier living
with ME. I noticed it with people I worked with too, when I was a social
worker.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
The only problem
with the hire chair was, I hated it. With a passion. It was grey and
uncomfortable. I still got so exhausted from sitting in it and I was
embarrassed to be seen in it. The worst thing was that the seat sling didn't
attach to the backrest so I was left with my bottom peeping out between the
two. Not dignified in the slightest. Every time I looked at the chair folded up
in the corner at home, it seemed to remind me of everything I couldn't do. On
top of that, it was giving my husband backache because the push handles were
too low for him.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
So, during one of my
many trips to my GP at the time, I asked her if she would refer me to
wheelchair services, to see if I could get a chair on the NHS. She agreed, but
I didn’t meet the criteria. There is a bit of a postcode lottery when it comes
to who is eligible for a wheelchair on the NHS, and where I lived at the time,
they considered that I wouldn't use a wheelchair often enough for them to
provide one. Instead, they provided me with a list of local retailers where I
could buy one.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
I struggled on with
the hire chair whilst unsuccessfully chasing second hand chairs on eBay. Money
was tight - back then I thought it pointless to claim DLA as I might get better
- and I felt I couldn't justify buying a new chair for the same reason.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
Eventually, my
husband talked me into buying a new chair from a discount site. Most of the
second hand chairs on eBay were actually going for around the same price. As
soon as my new wheelchair was delivered, my joy returned. It was blue (my
favourite colour), it was comfy, it was dignified. The push handles were a
better height for my husband. We went out in the sunshine for a picnic, and
people-watched in the park. I sat proudly in my new chair, happy to be out and
about enjoying myself.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
But it didn't last.
As time went on, we realised I was probably going to need a wheelchair for a
while, and the new one was wearing out already. All the joints were loose and
had to be tightened up all the time. The cushion had lost it's supportiveness. I
was becoming unhappy again. I wanted more freedom.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
I was beginning to
hate being pushed all the time. I couldn't look at the things I wanted to look
at in shops. I couldn't control my own speed. I got travel sick when my husband
changed direction without warning. People saw me as dependant and wanted to do
everything for me. It was difficult for me to change position when stationary.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
I began, literally,
to dream about pushing myself around. In my dreams it was easy, so easy I was
even flying in my wheelchair. I would be effortlessly speeding through my
dreams, and then I'd wake up. My husband and I started talking about a long
term solution. If I was going to get myself around, I'd need power assistance.
I looked at various options, but what I really wanted were <a href="http://www.alber.de/en/products/wheelchair-drive/mobility-wheelchair-emotion.html">e-motion</a>
wheels.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
I'd seen someone
using them at Greenbelt 2011, and promptly Googled them when I got home. They
seemed perfect. But they were an expensive dream, especially since to make the
most of them, I'd need a new wheelchair too.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
But in November
2012, I received a life-changing letter. I was about to inherit enough money to
buy the e-motions and a new wheelchair. I could scarcely contain my excitement.
Even Christmas paled into insignificance next to my literal dream-come-true. I
could barely think of anything else. I printed off the leaflet and showed
everyone I knew.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
In January 2013, I
went to try out the e-motions at an approved mobility shop. They got me to try
out lightweight chairs first, to see if that would be enough to enable me to
get around on my own. It was better, but not good enough. I tired quickly just pushing
round the shop. Then I got into the chair with the e-motions on, and I just
didn't stop. I went backwards and forwards for ages, until the guy asked if I'd
like to take them outside. Pushing myself along the row of shops, it was the
furthest I'd been independently in over a year. I was sold.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
Back inside the
shop, we discussed wheelchairs for hours, and I chose a chair, associated
options and a cushion. I also discovered why my other chair had worn out so
quickly. Who knew I was wasn't an 'occasional' wheelchair user? The NHS
certainly seemed to think I was!</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
I've had my current
wheelchair for just over a year now, and it has changed my life. I am happy
with the way it looks, with the way I look in it, with how it feels and how it
fits and supports my body. It minimises my physical fatigue in a way that no other
wheelchair I've tried ever did. It has been an enormous boost to my confidence
and it has opened up my world. I can do everything I wanted and more. I've
never been one for speed, but now I can 'run'. I adored dancing, and thought I
never would again (unless I recovered), but guess what? I <span style="font-style: italic;">can</span>.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
And that's the thing
really. A lot of people think a wheelchair means restriction. I understand why
that is. If you put a non-disabled person in a wheelchair, they are more
restricted than if they weren't in the chair. To those who can walk as much as
they want and wherever they choose, a wheelchair is restricting.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
But it isn't to
me.<span style="mso-spacerun: yes;"> </span>Today, I hope Eileen can hear me say
thank you for her generous gift. It isn't just a wheelchair. It is freedom,
confidence, dignity, independence and glorious possibility.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6v3IHJkSZQhbpAxmvKsjS5dMrOnEKaLKHwMGy5pPU34kcengKwq-HCIkiFshpYrz5e_KcBMk6FwEN-BR1dPazNYMEpc2JXQCIWlb8SVgnhTnL8PyRBYj2IwYOsbZHnEExECrjSj3JQds/s1600/IWCblogpic.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6v3IHJkSZQhbpAxmvKsjS5dMrOnEKaLKHwMGy5pPU34kcengKwq-HCIkiFshpYrz5e_KcBMk6FwEN-BR1dPazNYMEpc2JXQCIWlb8SVgnhTnL8PyRBYj2IwYOsbZHnEExECrjSj3JQds/s1600/IWCblogpic.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"> Picture shows me, a white female, sitting in my wheelchair. The wheelchair faces a view out to sea, I am looking over my shoulder towards the camera. </td></tr>
</tbody></table>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in; text-align: center;">
*****</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
Want to celebrate
International Wheelchair Day by making someone's wheelchair dreams come true?
You could donate to one of the following charities, or find out if there's one
local to you.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<a href="http://www.whizz-kidz.org.uk/">Whizz Kidz</a></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<a href="http://www.motivation.org.uk/">Motivation</a></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<a href="http://www.wheelchairfoundation.org/">Wheelchair Foundation</a></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<a href="http://www.redcross.org.uk/Donate-Now/Give-to-a-special-project/Lancashire">Red Cross</a></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
You could also sign
this <a href="https://www.change.org/petitions/nhs-wheelchair-services-nationwide-to-provide-complex-wheelchairs-to-everyone-with-need-for-them">petition</a>
which calls for better wheelchair provision from the NHS.</div>
Melhttp://www.blogger.com/profile/01974201971126211788noreply@blogger.com0tag:blogger.com,1999:blog-8649080200326568785.post-3590621954103084972013-10-30T20:24:00.000+00:002014-08-22T20:48:26.111+01:00ME/CFS: Places you can find out about my condition<br />
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
ME/CFS, the
condition I have, is one of the things that I am not going to write about very
much. This is because there are numerous places you can go to find out about it
and also numerous people blogging about living with it. Although everyone is
affected slightly differently, I do not think I can add much original material
to the internet regarding ME specifically.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
However, I know that
there might be some people wondering what it is exactly that I have, so I will
provide you here with a whole load of links that I have gathered over the last
couple of years. You can pick and choose which ones you click on, depending on
how much you want to know and how much time you have!</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<span style="font-weight: bold;">ME charities</span></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
The following are UK
charities who fund support for people with ME, research into the condition or a
combination of the two. Their websites give basic facts about ME, such as what
the symptoms are and how many people are estimated to be affected. On their
news pages you can find out about the latest research findings.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<a href="http://www.meassociation.org.uk/">The ME Association</a><br />
<a href="http://www.actionforme.org.uk/">Action for ME</a><br />
<a href="http://www.investinme.org/">Invest in ME</a></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<span style="font-weight: bold;">YouTube</span></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
There are lots of
videos on YouTube about ME/CFS. Most of them are depressing, a lot of them are
just words with sad music. Although I can understand why people with ME want
others to understand how truly awful it can be, I find it difficult to see how
such videos can really change people's minds about the matter. Feel free to correct me if you have seen one of these and been moved by it.<br />
<br />
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
However, is isn't all bad. The two links below
are the best videos about ME that I have come across, although there may be others. They are each made by a
teenager with the condition, and they provide an excellent explanation of the
condition and surrounding issues that people with ME may experience.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<a href="http://www.youtube.com/watch?v=A5tX_RbFjvo">ME Awareness by Poppy</a></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<span style="font-style: italic;"><br /></span></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<a href="http://www.youtube.com/watch?v=7YceFY16n3E">Ways to describe and explain ME/CFS</a><span style="font-style: italic;"><br /></span></div>
</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
There are also
various films that people are trying to make about ME (including interviews
with researchers etc), but a lot of them are relying on crowd sourcing the
funds, so only trailers are available at the moment.<br />
<br />
Again, I am somewhat skeptical of what this awareness-raising will actually achieve. But on the other hand, I do believe that more research and better recognition is desperately needed. ME affects more people than, for example, MS, yet more research has been done on MS and therefore more is known about it.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<a href="http://voicesfromtheshadowsfilm.co.uk/2011/trailer/">Voices from the Shadows</a> is a UK film that was released in 2011. It focusses particularly on those with very severe ME, who are often bedbound (I do not fall into this category).</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<a href="http://www.youtube.com/watch?v=ZnpwOEPSJ-4">The Blue Ribbon</a> is a film in production, currently looking for funds to enable completion. It is based in the US and should feature interviews with patients, family of patients and researchers.<br />
<br />
<a href="http://www.kickstarter.com/projects/959776320/canary-in-a-coal-mine">Canary in a Coal Mine</a> is a very new project based in the US. It has attracted a storm of attention online and looks very promising. The woman behind it has ME herself and is very well-read on the subject. She is interviewed <a href="http://blog.ted.com/2013/10/25/illuminating-an-illness-without-end-fellows-friday-with-jennifer-brea/">here on the TED blog.</a></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<span style="font-weight: bold;">ME blogs</span></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
On the right are
links to other blogs I read. There is a small list of blogs about ME, but it is
worth noting that some of the<span style="mso-spacerun: yes;"> </span>people in
my other blog lists also have ME. It isn't the main focus of their blogs, but there
are places where they mention it.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
Danni in particular
has written a great piece <a href="http://dannilion.com/2012/05/what-is-m-e/">here</a>. Although it is long, it sums up pretty
much all the important things about ME, in a way that is pretty easy to
understand.<br />
<br />
If you would like a US perspective, <a href="http://thoughtsaboutme.com/">this</a> is a good place to start, and there are some other US ME blogs and websites linked from there on the right hand side of the page. <br />
<br />
<b>Current Issues</b><br />
<br />
Currently there are 2 major issues causing uproar within the ME community.<br />
<br />
In the US, <a href="http://phoenixrising.me/archives/19618">the HHS have just signed a contract with the IOM</a> to produce a new case definition for ME/CFS. The problem with this is that it is likely that experts in the condition will not be part of the process, it is costing a lot of money<b> </b>and in any case there is a definition that was published in a journal several years ago that the scientific community view as perfectly adequate (<a href="http://www.cfids-cab.org/MESA/ccpc.html">The Canadian Clinical Case Definition</a>). This definition has not yet been adopted as diagnostic critieria by any country although it has been used many times for research purposes. The view of patients and many international experts is that the Canadian definition should be adopted by the US health authorities and the money instead spent on further research.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br />
In the UK, the National Institute for Clinical Excellence, who produce guidelines for treatment of many diseases and conditions, recently announced that they would be placing certain conditions, including ME,<br />
<a href="http://www.meassociation.org.uk/2013/09/nice-confirm-they-wont-be-reviewing-their-guideline-on-mecfs-any-time-soon-unless-26-september-2013/">on a static list</a>, not to be reviewed often. The view of patients and <a href="http://www.meassociation.org.uk/2013/10/mea-opposes-plan-to-put-review-of-nice-mecfs-guideline-on-hold-23-october-2013/">the MEA</a> is that the current NICE guidelines fall short, and in the light of recent research (and the Canadian definition which NICE ignored first time round), desperately need updating. Originally, it was anticipated that the guideline would be updated this year.<br />
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<span style="font-weight: bold;">In-depth Information</span></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
If you are really
keen to know lots about ME, these links are to websites which provide
more in-depth information about research and the politics surrounding the
illness. They are both US-based but with an international emphasis.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<a href="http://phoenixrising.me/">Phoenix Rising</a></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<a href="http://www.cortjohnson.org/">Cort Johnson</a><br />
<br />
So there you have it. ME in not-quite-a-nutshell. Unfortunately being such a complex, misunderstood illness surrounded by ridiculous politics, it will not currently, if ever, fit in a nutshell.</div>
Melhttp://www.blogger.com/profile/01974201971126211788noreply@blogger.com0tag:blogger.com,1999:blog-8649080200326568785.post-62793436129792982582013-10-18T20:15:00.000+01:002014-08-22T20:47:50.746+01:00Language and Disability<br />
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
I want to write
about the issue of language and disability mainly for my non-disabled readers,
but I also want to explain the words I have chosen to use within future posts.
There are a few different opinions about certain terms, and I think it is fine
for each disabled person to use whatever words they feel comfortable with. I
want to share my views here not just to educate non-disabled people but also to
justify my choices to disabled readers who may or may not share my opinions.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
Please be aware that I do not speak for all of the disabled community. If you are not sure which words a disabled person prefers, just ask them. </div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
Many disabled people
and all social workers (I hope!) will be familiar with the social model of
disability. <a href="http://www.xojane.com/issues/i-am-not-a-person-with-a-disability-i-am-a-disabled-person">This article</a> basically explains the social model and why some people prefer the term
'disabled person' rather than 'person with a disability'. If you aren't
disabled, I strongly advise you read the article.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
It is worth saying
that some disabled people do not like either term. I once watched a documentary
where a guy who used a wheelchair was designing a brand new type of wheelchair,
and he said that when the army dispose of a bomb they disable it, then it ceases
to function. He felt as though saying he was disabled was like being compared
to something which ceases to function.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
Generally speaking,
in the UK we prefer 'disabled person' and in the US 'person with disabilities'
is the preferred term. There are also differences between the US and UK about
the term used to describe discrimination against disabled people. This <a href="http://pseudo-living.blogspot.co.uk/2013/08/ableism-or-disableism.html#more">blog post</a>
and <a href="http://lisybabe.blogspot.co.uk/2013/07/ableism-stop-insulting-me.html">this one</a>
explain about that.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
I am intending to
use the following terms:</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<span style="font-weight: bold;">Disabled person/people</span> I have chosen this
because I subscribe to the social model (despite it's limitations, which I will
explore another time). I will not be offended if you describe me as a person
with a disability, because I do not feel as strongly about the issue as others
do. But I will always describe myself as a disabled person because that is how
I identify.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<span style="font-weight: bold;">Disablism</span> The word used in the UK to describe
discrimination against disabled people. I am using it for the same reasons as I
use the word disabled. However I do disagree with the term ableism (mainly used
in the US). I feel it is misleading and I was very confused by it when I first
came across it.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<span style="font-weight: bold;">Living with</span> As in<span style="font-weight: bold;">,</span>
<span style="font-style: italic;">I live with ME</span>. Yes, sometimes I suffer
with it, but I do not like to dwell on that and it is not the case the majority
of the time. This term also has no emotional connotations, it is simply a
statement of fact.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<span style="font-weight: bold;">Experience/experiencing</span> <span style="font-style: italic;">I experience symptoms such as headaches</span>. Again I am going to use this term
as it has no emotional connotations. My experience of symptoms is never a good
one (unless I am experiencing fewer symptoms relative to, say, the number I was
experiencing yesterday) but it isn't necessarily bad. Often it is indifferent,
sometimes even funny (I tend to fall over quite a bit and sometimes muddle up
words*)</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<span style="font-weight: bold;">Accessible/Disabled (facilities e.g. car parking
space, toilet)</span> I will probably use these words interchangeably, but I am
trying to move towards using the term 'accessible' because it is becoming more
widely used in the UK and has a positive connotation<span style="font-style: italic;">; I can go there because it is accessible.</span></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<span style="font-weight: bold;">Impairment(s)</span> Again, this is to do with the
social model. An impairment is what a disabled person has; a condition,
illness, or something else. There is no emotion attached, and it is a good way
of talking about these things without having to call it 'a disability', because
some people don't feel comfortable with that.<span style="mso-spacerun: yes;">
</span>It is also easier to explain your access needs using this term, rather
than having to explain the confusing medical names of the condition(s) you
have.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<span style="font-style: italic;">Because of my impairment, I need to do X this way,
instead of that way. </span></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<span style="font-style: italic;">My impairment means I need to use a wheelchair.</span></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<span style="font-weight: bold;">Wheelchair user/using a wheelchair</span> I vastly
prefer this term to 'wheelchair bound' or 'confined to a wheelchair'. This is
because there are connotations of pity with those terms, and no-one, no matter
how severe their mobility impairment, is glued into their wheelchair. Someone
might need a harness or lap belt for their own safety, they might spend a lot
of time in their wheelchair, but they almost certainly get out to go to bed at
least, even if they use a hoist to do so. More people than you think can get
out of their chair and walk a bit (I can), and even people who cannot walk at
all might get out to sit on their sofa or a comfy chair.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
I prefer the term
'reliant on a wheelchair' if someone cannot get around without one, or
describing wheelchair use as 'full-time' /'part-time' or 'indoor'/'outdoor'.
These are factual statements which describe how and where someone uses their
wheelchair. <span style="font-style: italic;">I am a part-time wheelchair user
and I use my wheelchair outdoors and in large indoor spaces such as shops.</span></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<span style="font-weight: bold;">Non-disabled </span>I feel this is currently the best
term we have for describing people who are not disabled. I don't like the term
'able-bodied' (although I sometimes use it because I am still training myself
to use 'non-disabled') because it implies that disabled people can't do things
because of problems with their body, and this is in direct conflict with the
social model.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
It also implies that
non-disabled people do not have impairments. It is possible for someone to have
an impairment, yet not be disabled. My husband has dyslexia, but it now has
very little impact on his daily life and he does not face barriers to normal participation
in society. I was the same before I had ME. I have mild dyspraxia, but I never
considered myself disabled because of it.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<span style="font-weight: bold;">Carer </span>By this I mean an 'informal' carer such
as a friend or family member, not a paid carer. This is a very difficult term.
I have become aware since reading disability blogs that many disabled people
are not comfortable with this term, however, no alternative has been thought up
as yet (please correct me if I am wrong about this). I think many carers are ok
with this term, certainly the main organisations which represent carers still
use the term. However, I am very aware that my husband hates the word, although
technically he would be considered to be my carer. As there is no alternative,
I will be using this term, although sometimes I might put it in quote marks if
I am finding that it doesn't feel comfortable in a particular context.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
You will have
noticed that I try to steer away from anything emotional in the terms I have
chosen to use. This is because, when talking about my condition, the fact that
I'm disabled or my access needs, I have no desire or need to invoke emotion in
the person I am talking to. It is not that becoming disabled and being ill is
not an emotional experience, far from it. But there is a time and a place for
discussing such things, and I have no desire to discuss them with total
strangers like shop assistants when all I need from them is to tell me where
the lift is.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
I think that pretty
much sums it up for me. I might edit to add further terms as and when I use
them. If you would like some further reading on the issue of language and
disability, you can find some <a href="http://blobolobolob.blogspot.co.uk/2008/04/language-of-disability.html">here</a>, <a href="http://catmint-1984.livejournal.com/89543.html">here</a>
and <a href="http://www.autistichoya.com/p/ableist-words-and-terms-to-avoid.html">here</a>.
You do not have to agree with everything you read, but I encourage you to read
different perspectives to aid your understanding of various points of view.<br />
<br />
EDIT: <a href="http://spashionista.com/index/2013/11/5/how-to-talk-to-a-cripple">This</a> is another different perspective to read and consider. </div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
*Please note: not
all disabled people will find it funny if they fall over or muddle up their
words. For people with communication difficulties, the experience can be quite
frustrating. Also, for some people falling over means they hurt themselves.
This is clearly not a laughing matter. The best thing to do is to take the cue
from the person. If they laugh, it is ok for you to laugh along with them.</div>
Melhttp://www.blogger.com/profile/01974201971126211788noreply@blogger.com0tag:blogger.com,1999:blog-8649080200326568785.post-8968542273797681412013-10-17T20:00:00.003+01:002013-10-17T20:00:39.958+01:00ApologiesI know I said that I wouldn't be posting very often, but I didn't actually intend it to be this long, especially since I've only posted some introduction-type stuff.<br />
<br />
So, apologies. I have excuses, like I was moving house, but really I need to stop reading other blogs and get on with my own! It has also been more difficult than I thought getting my jumbled thoughts into coherant posts.<br />
<br />
I have a couple of posts lined up pretty much ready to go, so expect to hear more from me over the next week or so.Melhttp://www.blogger.com/profile/01974201971126211788noreply@blogger.com0tag:blogger.com,1999:blog-8649080200326568785.post-62581464480733575662013-07-11T15:57:00.001+01:002014-08-22T20:41:49.798+01:00Becoming Chronically Ill/Disabled<br />
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
When I returned to
work after the Christmas break, in January 2011, I didn't feel right. I
couldn't put my finger on it. I carried on as usual, thinking maybe I just had
a few too many late nights at Christmas.</div>
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<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
Two weeks in, I went
to Southampton at the weekend to see friends. One of them was off to Venice for
a student exchange. I noticed my glands were up and knew I was going down with
something. By Monday, my tonsils were feeling inflamed too, so I phoned in sick
and went to the doctor, in case it was tonsillitis. My GP said it didn't look
bad enough to be a bacterial infection, and that it looked like a virus that
was doing the rounds. She said to take a couple of days off and then I'd be
fine.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
But I wasn't. I was
good and took the time off, but a week later I found myself back in her office
once again with the familiar fatigue having started to set in. We tried some
antibiotics. We tried different antibiotics. Eventually she tested my blood again.
Low vitamin D. Supplements. Still nothing. Cancer scare. That revealed that I'd
had glandular fever again. An explanation for the tonsil swelling, and
prolonged fatigue.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
But by this time I'd
been off work several months. The fatigue hadn't gone away like it had before.
Other symptoms were starting to creep in. My legs often felt like jelly. Then
they started giving way. My glands hadn't settled down. I began to notice that
how much I did affected my symptoms. They got worse if I did too much, but I
couldn't get a handle on what was too much. I couldn't understand my lack of
energy. I began to get frustrated. Any improvement was destroyed because I
thought I was getting better and started doing things again. Still I didn't get
it.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
Slowly I began
noticing headaches, concentration problems and minor memory lapses. Random
aches and pains, a couple of dizzy spells. And still the relentless, severe
fatigue and need for sleep.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
I nearly attempted a
return to work, but before arrangements could be made, I caught a cold. I'd had
another virus the month before. Infection after infection ensued, each one
making me progressively more debilitated. After I'd had a cold, I would get out
of breath just climbing the stairs. This went on for weeks. When improvement
came at last, it was only small, and then another infection came anyway.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
I slowly began to
realise I might not be going back to work. I slowly began to realise I couldn't
walk very far and needed a wheelchair. I slowly began to realise how much help
I needed with stuff. I slowly began to realise I was disabled.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
I had a big relapse
in October 2011. I went very pale, struggled to climb the stairs again, got
exhausted standing in the shower. I had to rest a lot, especially in the
mornings when I struggled to function. The glands in my neck and chest were
swollen and painful. My brain didn't work properly. My legs didn't work
properly. My arms ached from cooking an evening meal. Months before, I had
already given up most of the household tasks to my now-husband.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
At last, I gave in.
I stopped fighting it. I agreed not to go back to work. I applied for
Employment and Support Allowance. The pressure was off, I relaxed and rested. I
finished planning our wedding via email and the internet.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
In the spring of
2012, I improved a little. Tentatively at first, but then it was clear I was a
bit better. My cheeks had colour, I could walk a little bit further and
sometimes I didn't need to rest in the afternoon. It wasn't good enough to go
back to work, but I thought maybe I was getting better.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
I knew getting
married and moving house would take it out of me. By August 2012 I was worse
again, but stable, and not as bad as I had been before. I was confident I could
improve again, and planned to do a proofreading course with a view to working
from home.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
But as the dust
settled, it was clear I was still struggling. I was constantly frustrated at
how little I could do in a day. My to-do list kept getting longer. In September
I got a virus, and at the beginning of October a winter relapse took me once
again.</div>
Melhttp://www.blogger.com/profile/01974201971126211788noreply@blogger.com0tag:blogger.com,1999:blog-8649080200326568785.post-19516654886835327962013-07-09T20:33:00.000+01:002014-08-22T20:35:41.728+01:00Becoming a Social Worker<br />
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
In 2002, or
thereabouts, I decided I wanted to be a social worker. I'd always wanted to
work with children, but also wanted to go to university, as I enjoyed learning.
I did one of those silly computer quizzes they make you do at school, to find
out what career you would be suited to. There were lots on my list, and social
work was one of them. There was also a big advertising campaign going on at the
time to try and encourage people into social work. The strapline was 'Social
Work: It's about people. It's that simple, and that complicated.' I thought it
sounded fascinating.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
I did my A Levels
and a gap year working as a care assistant with people with learning
disabilities. I had to delay the start of my job because I was unwell. I had a
fever for a couple of days and then just felt really tired all the time. I had
blood tests done- nothing. I asked the doctor what was wrong with me. He
replied, 'post-viral fatigue syndrome.' He advised me not to start my job till
I felt better, and that might not be for a few weeks. I took his advice and
when I felt better a couple of weeks later, I started.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
I went into that job
completely naïve and unprepared, but I left with burning passion to make a
difference to the lives of people with learning disabilities. During the year I
had 2 months off with glandular fever, but I recovered well.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
I had an amazing
time at university, (cliché alert) growing as a person and developing a sense
of professional identity. I graduated with a 2:1 in July 2008. A week before my
graduation I had been offered my ideal job as a social worker in a local authority
learning disability team. It was the first job I was interviewed for and the
only one I wanted. I accepted straightaway.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
I travelled Europe
with my now-husband during that summer. When we came back, I went down with a
dizzy virus. I took to my bed, then felt better after a couple of days, so I
decided to do some manic cleaning of our new house. The next day, I was so
exhausted I could barely think. I alternately thought, 'Food' and 'sleep'. The
fatigue stuck around for a few weeks. I had to delay starting this job too. I
had more blood tests. Nothing. It went away and I started my job. I thought no
more of it.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
For the next two
years, I was more or less fine. Work was stressful at times, and I feared
constantly that I wasn't a very good social worker, despite everyone telling me
I was. In 2010 I didn't plan my holidays very well, and ended up working a long
stretch over the summer without much time off. I also had at least 2 stressful
cases, one of which involved daily phone calls due to the precarious situation.
The other included a day in court (which is rare when you work with adults).</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
I could feel myself
getting run-down, and on the advice of a locum GP, took a course of
multivitamins with ginkgo. It helped a bit, but I went down with a cold/fever
in September anyway. I took 2 days off sick and went back to work. My
colleagues told me I looked pale and I struggled through the day. I went to my
GP the next day, and was told to take the rest of the week off. I ended up
taking the rest of the month off.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
I went back feeling
a little tired still, but this soon improved and I felt full of energy. My now-
mother-in-law said she'd never seen me looking so well. I threw myself into my
work, beavering away to catch up on the piles of paperwork and get some cases
closed. I did well, and finally felt like I was getting somewhere. I was
beginning to claw back some confidence as I felt like I finally knew what I was
doing. I was looking forward to taking on some new cases with fresh challenges.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
I was feeling tired
by Christmas but thought that was normal. I was going to have some time off,
and ended up having a lovely Christmas.</div>
Melhttp://www.blogger.com/profile/01974201971126211788noreply@blogger.com0tag:blogger.com,1999:blog-8649080200326568785.post-71292049754231744392013-06-23T19:12:00.001+01:002013-06-23T19:12:58.722+01:00Intro
<br />
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
I'm going to start
blogging again. The main reason is because I have been having ideas, which
didn't happen enough with my last blog, so I finished it. I am very much hoping
that this blog will be better.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
Since I started my
last blog, a lot has changed in my life, and this year I am on a mission to
make sense of the situation I find myself in. I have already started this
process; it started from the moment things changed, but I would like to take
some time to reflect on that in the hope that my experience may help others in
a similar situation.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
I also feel I have
some things to say about disability and social work, and about how I felt about
disability as an able-bodied person compared with how I feel now as a disabled
person.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
Finally I feel that
it will help me communicate my feelings about my situation to other people.
Reading other blogs has helped me to understand the writers' perspectives in a
way which I wouldn't have through just talking to them. Reading the blogs of strangers
helps me understand people that I might never get the chance to meet in real
life, but whose perspective and opinions could still be useful in helping me
better understand the world around me.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
I hope that I can
provide some useful food for thought for social workers and students. There
will hopefully be a smattering of useful information and links too.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
There are some
things that I am deliberately not going to write about. It is not because I do
not care about these things or don't have an opinion about them. It is just
that there are plenty of other people who are saying it better than me. I will
endeavour to point my readers in the direction of these people.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
My first couple of
posts have been pre-written and so will be published quickly. These will give a
bit of background to me in terms of how I became a social worker and how I
became ill. If you know me well, please feel free to skim or skip these posts,
as you will probably know most of what I will be writing about.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
These posts are not
intended to be particularly in-depth and I hope that they do not come across as
too emotional. The intention is purely to give context, and to have something
to refer back to when I want to write about particular topics in more detail.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
In the future, posts
may not be as frequent because I have to write a bit at a time and cannot use
the computer for long periods. </div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
Also, please bear
with me regarding layout, font etc. I have done my best so far but things may
change as I get to grips with the technical side of blogging! Any suggestions
regarding layout, accessibility and other technical things are welcome.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
DISCLAIMER</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
The opinions in this
blog are my personal opinions unless otherwise credited, referenced or linked.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
I am not a social
worker currently. It is a protected title and one has to be registered to use
it. I was registered as a student from 2005-2008 and as a qualified social
worker from 2008-2012.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
Although I am not
registered and cannot call myself a social worker now, I do have a degree in
Social Work.</div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
<br /></div>
<div style="font-family: Calibri; font-size: 11.0pt; margin: 0in;">
I am not employed by
any organisation, university or local authority and do not represent the views
of any of these.</div>
Melhttp://www.blogger.com/profile/01974201971126211788noreply@blogger.com1