'Disability as identity' - discussion thread

Gigi is not my daughter but I' ll see if I can get permission to post a screenshot here

 

Sorry, I obviously got the wrong end of the stick somewhere.

 

No problem. The wording wasn't entirely clear.

 

what a poisonous ramble/manifesto

 

If I was healthy and decided to "choose an identity" for myself (something that I think sounds extremely bizarre and frankly very odd) it would be something far more cheerful and positive than being ill or disabled. I could be the woman who wears purple. (Does that count as "an identity"?) Or red, as an alternative, which is actually one of my favourite colours, but I would probably struggle to pull it off at my age. The idea that someone needs or creates an identity, as if it is something constructed voluntarily, quite shocks me.

A favourite poem, copied here just because I wanted to...

Warning by Jenny Joseph

When I am an old woman I shall wear purple
With a red hat which doesn’t go, and doesn’t suit me.
And I shall spend my pension on brandy and summer gloves
And satin sandals, and say we’ve no money for butter.
I shall sit down on the pavement when I’m tired
And gobble up samples in shops and press alarm bells
And run my stick along the public railings
And make up for the sobriety of my youth.
I shall go out in my slippers in the rain
And pick flowers in other people’s gardens
And learn to spit.

You can wear terrible shirts and grow more fat
And eat three pounds of sausages at a go
Or only bread and pickle for a week
And hoard pens and pencils and beermats and things in boxes.

But now we must have clothes that keep us dry
And pay our rent and not swear in the street
And set a good example for the children.
We must have friends to dinner and read the papers.

But maybe I ought to practise a little now?
So people who know me are not too shocked and surprised
When suddenly I am old, and start to wear purple.

 

I don’t know anything about the Spiked author, but I’m fairly certain the other fellow has a sizable following. Either way, disconcerting.

 

For me over 30 years, I would say ME has repeatedly taken away the identities I valued: the successful and innovative Speech & Language Therapist, the regional clinical advisor, the well liked manager, the person invited to talk and write to about horticulture, the gardener, the trainee yoga teacher, the local historian, the godparent and friend who traveled across the World when needed, property developer, etc. When ME took away one identity, such as my career and training as a yoga teacher, I sought new identities. I squandered health and financial resources to keep up my old ways of life.

I would say I was a closeted ME sufferer for several decades, trying to live my old lives despite it, though also someone who disappeared for long periods, it has only been over the last ten years when I have deteriorated such that physically and intellectually I have had to give up my home and garden, withdraw even from the few local groups I still supported, became house bound and often bedbound that I was forced to be fully out about my ME and at least online participated in disability forums.

 

That is a somewhat unhinged review. All of the rumination about Chronic Lyme, it almost seems as if he is projecting his own experiences on others.

He also doesn't seem to understand that "Chronic Lyme" as a hypothesis only persists due to the neglect of the condition itself - given so little research, in the absence of a clear answer, is it no wonder that patients fill in the blanks? There are many illnesses that are poorly understood - MS might have demonstrable lesions, but no one has any idea why.

 

One might call it "chronic EBV"?

 

LC is just part and parcel of a normal working adult's life is the same old argument as it was, and still is with ME. How about at least being original with the mud slinging.

Everyone feels like you do: puzzling/amazing how some can dismiss serious symptoms, and even research findings that indicate significant obstacles to recovery and health.

As for secondary gains like attention, my experience with ME includes over 2 decades of being sick and alone every work day.

No friends or relatives dropping by. Not even much in the way of phone calls, as people pull away from those of us whose lives are misunderstood. And, everyone I knew busy, carrying on with their healthier lives. I was absolutely alone and so painfully lonely.

So no, not lots of attention then.

As @Peter Trewhitt has described, one's identities are ripped away with ME and other very debilitating diseases. It's devastating to go from being a respected, earning member of society to being viewed as a crazy, lazy, benefit scrounger.

I have never been willing, nor happy with the so-called role of a sick person. Many pwME expend much time, finances etc., trying to free themselves from this terrible quagmire of an illness. We go to great lengths to recover. Thus, some find themselves in much poorer financial shape with little to nothing to show for all their hope and effort.

 

Can we even choose an identity?

I have repeatedly seen comments that lecture people with chronic illness for identifying as being chronically ill, or disabled. These comments seem to reveal the belief that identity is a choice, and that identifying as chronically ill is a bad choice.

If you're mildly affected, then maybe you do have a choice. But if chronic illness affects every area of your life, then pretending that being chronically ill is not an important part of who you are (even if you don't like it) is only a rejection of reality.

 

People don't choose illness or injury, but they can choose the language used to describe their situation.

There are some people with various impairments or illnesses who don't want to be called disabled. They prefer other labels (Handi-Capable, disAbled, differently-abled, special needs, probably a long list of other terms I'm forgetting) instead of basic phrases like "disabled person" or "person with a disability." I think it's mostly older people who lived with a lot more stigma surrounding disability, but I'm not really sure.

And even the phrase "identify as" can be contentious. People often think that it means inventing an identity when it's just an expression, another way of wording things.

Most people say "I'm disabled" or "I have a disability" vs. "I identify as disabled." But don't those sentences mean pretty much the same thing? If someone needs accommodations due to a disability, does it matter how they express the idea that they're disabled and need these accommodations?

I'm sure there must be reasons for using "I identify as" vs. "I am" but it is beyond my understanding at the moment (maybe disability advocacy issues?)

There was an interesting twitter thread about identifying as disabled:

It's a long thread, with several interesting comments, but one important point was that people with chronic illness (and perhaps other groups?) often reject the label of disability at first. It may be years before a person with serious chronic illness accepts (identifies with) the label of disabled. Conversely, some folks never accept the label.

So there are some gray areas around that phrase "identifying as disabled."

This got long, and rambled a bit, but I hope it's useful.

 

People remain connected when they do activities with other people, including parties and other events. When we do not show up, time after time, that connection is lost. They do not remain connected to people they do not see. There is misunderstanding for sure, but in my experience mostly its that we are seen as withdrawing from their little community of friends, and even the community of relatives.

 

In my case perhaps for about a decade before even acknowledging illness, and another decade before even considering disability. It did not help that for the most part those were two decades with poor or irrelevant medical advice.

 

Another reason people talk about “identifying as disabled” is because with some things, like Autistic people and Deaf people, some of these people consider it to be a disability and some don’t.

 

I’m going to strongly disagree with you here. I understand that for most people on s4me, ME is their sole disability, and of course we want to be cured of it.

But the disabled community consists of people with a diverse range of disabilities.

I was already disabled before I developed ME, so I suppose I have a different perspective.

Those of us who’ve been disabled from birth generally feel that disability should not be seen as a Bad thing (because that typically leads to disabled people being seen as inferior), that our disability is part of what makes us who we are.

There’s also a big push to get people to see disabled bodies as beautiful, rather than disgusting which is what many abled people think.

We don’t want abled people to “feel bad” about us, we don’t want to be pitied for being disabled. We just want to be treated as equal human beings with equal rights.

Of course when it comes to chronic illnesses like ME we do want a cure though.

 

Indeed. It’s only recently that I’ve felt this, and I have been disabled since birth as well. Yes, for my chronic illnesses I do want a cure, but I know that in reality it won’t happen. It probably won’t even happen that I’ll have a major recovery. So being disabled (& unwell) is a part of my identity now - whether I like it or not - because it influences or colours everything that I do & what others do for me. And with my autism, I’m learning to understand myself more & accept that too.

And, my disabilities & illnesses are a big part of how I look on the outside too. My body’s very different because of muscle wasting, my eyes looking sleepy all the time, figure changing a lot, and I used to hate looking at myself. But I only have one body, so I might as well learn to love it while I’m here. And seeing other disabled people on social media modelling, & loving themselves while being disabled, and talking about how their disabled body is beautiful & sexy : it helps me so much. Actually, it’s helped me so much that I recently bought myself some beautiful playsuits to wear during the summer time, which for the past 6 years I have not been brave enough to do, as I’ve hated my legs so much. It’s the sort of thing I would’ve loved to have worn before I fell ill. And it’s because I saw a disabled women with severe muscle wasting wearing a bikini on social media and modelling, and talking about how she loved herself and her disabled body, and it made me cry, as I realised I looked a bit like her. It made me feel happier & braver in myself.

I think the fact people feel their disability is a “good” thing, or that they have learned to love themselves & their disability, and that it’s a part of their identity, can be a lovely thing too.

 

I think that it's rude (and intended to be so) that he has used that term in the first place - given that it is written and he'd have had more than enough time to check etiquette I assume it is choice which tells me all I need to know about his personality and purpose in writing it.

Using the term 'disabled' is something relatively well-known in normal circles as old-hat to be replaced by people with disabilities. So to then claim 'identify as disabled' like the same populist types try and use that antagonistic phrase for 'identify as anything else' just does not add up. A disability is a thing. Those with them have been asking the very opposite of having their whole identity to be pigeon-holed by it. SO he is trying to kill 2 birds with one stone by reintroducing that pigeon-hole whilst claiming it was them demanding it 'because identity' to make it seem like some 'emotional life-raft' instead of ... a disability.

I don't know why we still accept most people not being able to act like grown-ups on disability or illness. It is unacceptable to choose to be ignorant and never look up what someone has whilst also not taking their word for it. It's also childish and pathetic. Trying to reframe that as an 'identity' or an 'abstract thing manufactured' is just sophist populism 101. But hey I'm from the school where instead of sacking black people we should sack the racists, and that includes the old-hat game-playing of 'as long as you keep within the policy you aren't one' - so don't see why people have an excuse not to inform themselves and act accordingly on someone's needs.

To go around labelling people and then telling them they asked for it, just because they have needs you can't accept - or possibly have contempt due to bigotry or prejudice - is classic narcissist. And that is really what this seems to be a speech for. Borders on encouraging people to dislike those with disabilities - the only reason they'd have to 'identify as' is because society made them to meet needs such as a blue badge or wheelchair access.

So maybe the discussion should be 'yes, why on earth does society make an issue and a label for dare noting a need that is more than fair to ask for, or for having an injury or illness?'

Why do taxis get 'wheelchair exemption' cards so they don't have to take wheelchairs? And so on...

WHose issue is it really people are carrying?

 

This.