Someone well-meaning recently suggested that I should not see myself as disabled.
In fact, more accurately, the phrase used was “I still don’t think you need to see yourself as disabled.”
The fear being?
“There is always a danger that once you believe that as the case, you will never then see yourself as being independently mobile again.”
The discussion had started because I had referred to the experience of being visibly disabled when I first used a mobility scooter.
I had described myself as disabled, for the first time where this person was concerned. And they couldn’t get their head around it.
Their use of the words ‘I still’ showed that heels were firmly dug in.
Many disabled people will have had to counter comments like these and deal with friends and family in denial.
It can really throw you. But I tried to explain.
First I tried to explain why people have a problem with disability in general.
Then, not for the first time, I tried to explain how my condition affects me.
I also pointed out that an able-bodied person generally considers two legs as the only means of being independently mobile.
Wheelchair users may have a different view.
To the average able-bodied person without any experience of disability a wheelchair represents imprisonment, lack of freedom, dependence.
To a disabled person a wheelchair can represent liberation, rediscovery of freedom and independence.
It helped me enormously to be able to refer to the Social Model of Disability.
But I wonder how much good it really did.
The following was very relevant to my argument:
"The social model of disability can (also) be used to understand the family lives and personal relationships of disabled people. This is because the cultural environment in which we all grow up usually sees impairment as unattractive and unwanted.
"... it is not surprising that many people with and without impairments do not know how to respond. This helps to explain why, for some people, coming to terms with a disabled lifestyle represents a personal or family tragedy.
"The social model also recognizes that for many people coming to terms with the consequences of impairment in a society that devalues disabled people and disabled lifestyles is often a personal tragedy. But the tragedy is that our society, and increasingly other societies, continue to discriminate, exclude and oppress people viewed and labelled disabled and this is the subject matter of emancipatory disability research."
But can people we know and care about, whose opinions matter to us, be enlightened by being ‘quoted at’ in what can sometimes amount to an evangelical fervour?
I am at times desperate for people I know to understand my disability. But finding the right tone, the right balance, is difficult.
If I am told I shouldn’t see myself as disabled, I certainly feel I should respond.
I owe it to my self-worth and my own growing acceptance of my disability to at least try to explain my stance.
“for many people coming to terms with the consequences of impairment in a society that devalues disabled people and disabled lifestyles is often a personal tragedy.”
This would explain why, after becoming disabled three years ago, I had a nervous breakdown.
It was a tragedy at the time. A bereavement, a loss of my former able-bodied self. I went into denial. And everyone around me went into denial.
No amount of theorising can reach you when you are in the first stages of dealing with a sudden disability.
But boy, can it help later on.
It’s been through blogging, and other bloggers that I have become familiar the Social Model, and I would now describe myself as a passionate advocate.
I really do believe that attitudes at large can disable people far more than their actual condition.
I believe that prejudice and ignorance cause untold damage, unless of course it is told.
Which is where battle commences, and activism begins.
Did I become a disabled activist all of a sudden by defending myself?
Activism is largely borne out of the experience of prejudice and ignorance.
These seem harsh words in relation to the person who caused this debate.
But friends and family, and even your own bewildered self can reject disability because prejudice and ignorance are largely to do with fear.
So I tried to explain things the best I could.
How I am disabled. Why I am disabled. And I was explaining this to someone who has known me for more than a decade.
But that person has not been through the mental processes I have had to go through to arrive at where I am. And some days, I still haven’t really arrived.
I have been disabled for three years, but simply couldn’t acknowledge it for a long time.
It wasn’t just about receiving DLA or applying for a blue badge or any other external medical or societal validation that came my way.
It was about what was going on inside me.
The process of acceptance. Moving out of denial into a far healthier place.
A place of strength and knowledge.
When you are disabled, this is the place you want to reach.
And you want everyone who is dear to you to be there with you.
Only that takes longer. And sometimes it just may not be possible, because you can try to explain, but you can’t always make a person understand.
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15 comments:
It's pretty good going, you know? It was a good seven years in before I began to use the word in reference to myself. And it was, as you say, a vital part of coming to terms with the very real and genuine experience of loss which getting ill entailed. Which I do think goes beyond merely the social experience of disability; not being able to do something one was previously able to do and enjoy is also a signifcant loss. Thus the process; Elizabeth Kübler-Ross stated the five stages of grief were denial, anger, bargaining, regret and acceptance. And yeah, that was pretty much it.
However, we all experience loss and life goes on. If you meet someone who lost their home, their dream job or went bankrupt ten years ago, you don't imagine that their life was permanently ruined by the event.
But an odd thing about such conversations is what non-disabled people focus on. There are very few non-disabled people who really understand that my greatest loss and the cause of by far my greatest ongoing frustration is not being able to think; I would happily exchange some of my already limited mobility for a fully functional brain. And yet others think my tragedy embodied by a wheelchair.
Yes, it is a significant loss and those five stages are very recognisable. But it is a process, and knowing you are going through something natural can be a comfort.
Re: my greatest loss and the cause of by far my greatest ongoing frustration is not being able to think
I too mourn my once wonderfully sharp mind. That isn't a boast, it's recognition of something I loved and lost. The invisible loss of thinking can only manifest itself in quite complex feelings. So people respond to the visible instead.
I would venture that your blog and your writing suggest that you haven't completely lost the ablility to think ;-)
Thank you for stopping by my blog :o) I have been very moved by your words and openess within your blog. I am unsure how much of my own story you have read but you can find out more HERE
I am going to keep checking in to see how you are doing - it's great to 'meet' you :o)
Hope you have have a good week x
Seahorse,
Thanks for sharing that with us. Accepting yourself as a disabled person is a very big step. It took me ten years before I really accepted it for myself. I had a Blue Badge (or orange as they were then)and I was in receipt of DLA and had a Motorbility vehicle and I still didn't consider myself disabled. I believe it was down to fear. I didn't know many disabeld people at the time and had no disability awareness (although I was involved in a work Disability Focus Group that successfully campaigned for access for wheelchair users at my office).
After I went on a Positive Action course for Disabled People I began to change. Acceptance changed my life completely and exposure to the Social Model cemented that change.
Non-disabled people oftem find it hard to fathom why some disabled people wouldn't want to change how they are, but then they are viewing it from a non-disabled view point. As you said a wheelchair is a means of being independently mobile to a wheelchair user. Viewing it as such is a positive and dare I say it, a life inhancing thing. However, if our environment disables a wheelchair user by not providing access then it is the fault of the environment we live in and not because someone uses a chair.
By the way, congrats on becoming an Ouch blogger. I'm looking forward to reading your articles along with Goldfishes, Lady B's and Nicola's who I suspect of being a lasped blogger of some note.
talj: thanks for popping by. I have read your story and I was moved to tears. Your strength and emotional honesty shine through at your blog.
Marmiteboy: thanks for such a thoughtful and personal response. It's been good to share this experience with other people and in turn find out how they come to terms with it all. And thanks about Ouch, am very excited. All this blogging is helping me cement change too.
You open up a really important issue.
Having worked with people with a disability for years, then having a son with a disability and now having become unwell and starting to realise that I am disabled, my life has been(thus far) an unfurling of understanding.
I've known about the social model for years but it's a different bucket of eels when you begin to think it might apply to you.
I think we all have a degree of misunderstanding about others' conditions and issues. What counts is acknowledging that and being prepared to listen to others and hear our own prejudices too.
My own difficulties are hidden. No one would know the difficulties I have from day to day, moment to moment and how hard I try and have tried to 'pass' as 'OK'. (Now I have reached a stage where I don't know why I tried to hide it ). I even did that when I worked for a charity that was all about promoting the rights of disabled people. Many other employees used wheelchairs or were deaf or visually impaired. Somehow, I felt that because I didn't need those things I wasn't really ill, wasn't really disabled --- didn't have enough points to join the Club (as one quite well known disbaled artist said to me only *partially* in jest 'I can call myself a crip because I am one. You can't call me that because you're not'!).
It's all about perception --- by yourself about how and who you are and by others about what they regard as 'disabled'.
One more little story told to me by a friend who has a son who is autistic: She went to a party with her 3 children, one of whom is autistic. He has only just reached the stage where he can tolerate such social occasions and where his mother feels secure enough to take him.
Shortly after they arrived she noticed a young woman staring and staring at her autistic son. He has quite unusual mannerims which can bring unwarranted attention. She tried to ignore the stares and brush it off as the woman's ignorance or her own paranoia. The young woman still stared and stared. Finally my friend could bare it no longer and addressed the young woman directly:
'Will you please stop staring at my son. He has a disability. He is autistic.'
Over her shoulder an older woman's voice said 'So is she'
Cusp, there's a lot of insight in there. It must be hard at times having so many dimensions to your understanding of disability. But unfurling is a great word to use in terms of understanding. I'm thinking of a fern frond. It unfurls gently over time. And I'm with you on hidden disability. It really can hold up the acceptance process on both fronts - namely yours and then those people you know, and once you go 'visible' those you don't.
I also agree understanding of each other within the disabled community leads to more support.
You so rightly put it:
"I think we all have a degree of misunderstanding about others' conditions and issues. What counts is acknowledging that and being prepared to listen to others and hear our own prejudices too."
Seahorse, what a wonderful blog. We are so in sync as I think you know from reading my blog today on OUCH. I so agree with you about self acceptance and about seeing a chair as liberating not confining. I still get sad looks from people who knew me as a walker, even little taps on the shoulder - the buck up type. Please. You said in your comment on my blog today that you were pleased to be in my company ... well back at ya! I'm glad I discovered your blog this way ... look forward to seeing how we all do on OUCH.
Dave Hingsburger
If you stop and think about it for a bit, our perceptions - shaped by the norms and values of society - are really rather odd. Many people I know in their early twenties are desperately searching for limits within a seemingly limitless lifestyle - we can consume endlessly and diversely, go anywhere, do almost anything and if it can't be afforded there are almost limitless loans. So - when somebody comes along who not only has limits in the form of a physical disability, but has adjusted to them through a long process of enlightenment - surely we should revere them. Of all the many blogs I've read, the wisest are those written by a "disabled" hand.
Through my struggle with this weird illness I've become much more of a real person rather than a capitalist clone and I have gained what I never could have before: a sense of self-trust and self-knowledge. To me, this has much more worth than an ability to walk unaided.
So true Fluttertongue! It's a gift when I see people a decade younger than myself with such wisdom. And you are so right about capitalist clones.
I have no idea why (well I do, I got an email from Amazon) but I found myself looking at their summer deals yesterday.
I've been ill for as long as it's taken for ipods to become attached to just about everyone, it seems.
Now, if you own one don't take offence, but this is just an example specific to my impairments.
It's so weird to have not been part of such a big 'trend' but also so refreshing and liberating.
My noise sensitivity rules them out, I can't afford one, and hey, I don't actually WANT one. And this from a former rampant consumer. I share your enlightenment, and am at least glad to have left that world behind. But I do know that Gordon Brown is now PM. And I know he tends to listen to political speeches and podcasts on his, not the Arctic Monkeys :-)
Thank you so much. You state your perspective so wonderfully, I enjoyed reading everything you had to say here.
It's very hard for people without disabilities to know how to interact with someone who has one. We know we aren't supposed to call them brave, or appreciate their courage. But at the same time, as you've pointed out, we shouldn't (and in a lot of cases, can't) deny or ignore it.
But using the Social Model that you presented, I'm able to see that I've been living with an invisible disability for years. I remember when I accepted that there was something going wrong inside my head. I felt ashamed and disgusted with myself, and hopeless because it was the way it was and it wasn't going to change. Eventually it all kind of dulled and now I only think about it on occasions. Perhaps its time I accept the problem and start seeking out treatment, rather than living half a life being embarrassed?
Aaron thank you. It can really open doors when someone is switched on to a different way of looking at their life. If you feel you have a problem that could be treated, perhaps talking to a friend first will help you sort out your feelings of embarrassment. Or try a helpline. I have used several, from NHS Direct to the Samaritans and several in between and found it very helpful to be able to talk to someone impartial about my feelings. It helps to try and straighten things out a little before you go to a GP or ask for treatment. Some medical people do a wonderful job, but if you feel your problem has 'dulled' and you are ok about your level of functioning in life, be careful who you choose to take your problem to. I hope this helps.
And Dave, little taps on the shoulder indeed. It's a nod and smile moment, yet we know that people are struggling with ways of expressing support sometimes. Other people's inadequacies are usually for a reason - their own hang ups. It's a fear thing I think.
My most recent? "Ooh I'd love a ride in one of those". Would you? Really? When I got that comment I just smiled and told him to hop on the back of the shopmobility scooter. He didn't.
Seahorse, this is a really wonderful piece...it explains a lot about the *ongoing* process of understanding anything...It is a road...not a static one time understanding and then you're finished, and your writing really illustrates that... Thank you so much for sharing...
Thanks imfunnytoo. I do agree that it's a road, and that really we never stop learning all through our lives. So perhaps we pause at places of understanding along the way, but then we have to keep on with our journey, keep the momentum going, keep on learning and adding to our experience.
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