Mar 23, 2012

Defined Through Disability

Just got home from a "kegger" (a type of event that, until recently, I thought only took place in America) where I had a particularly intense discussion with a friend about how people with disabilities define themselves, and it got me thinking.

(left to right) Leanne, Me, Dr. Don Lewis and Stella,
talking about ME/CFS on No Limits in 2009.
A few years ago, before an interview, Stella Young asked me if I wanted a cure for CFS: a question I was completely blown away by.  Did I want a cure?  Of course I wanted a cure!  No one likes having CFS!  The question was absurd to my ears, and I may even have laughed out loud when it was asked.

A few minutes later I had a better idea of where she was coming from.  Stella is one of many people who do not see disability as a bad thing.  Rather, it is simply a part of them.  Part of a whole that no person should ever feel ashamed of.  A whole that has a right to be accepted, and should not be expected to change in order to fit in with someone else's ideal of 'normal.'  Stella herself would never accept a 'cure.'  She is happy and confidant, despite the inconveniences of needing a wheelchair and having brittle bones.  She was born this way, and feels proud of who and what she is.

This conversation prompted me, a few months later, to sit with the No Limits cast and ask them to "raise your hand if you want a cure for your disability."  I raised my own.  All eight people responded quickly, then stared at each other in surprise.  An animated discussion followed where we eventually concluded that, for this group at least, the common factor in those desiring a cure was not severity, level of physical pain or access problems; it was that our disabilities were acquired.

No Limits Cast 2010 (left to right):
Phin, Carly, Louis, Elvira and Carrie
Louis and Carrie had both become very adept at fundraising in their quests to be cured, Louis raising funds for trips to India where he receives stem cell treatment for paraplegia, Carrie for research into Friedreichs Ataxia.  Both have lived most of their lives without a disability and want to go back to the way things were, paving the way for others to do the same, much in the style of Christopher Reeve.

Elvira, Brian and Gary were much more relaxed about it.  "It's just how I am, I don't need to change."  I found this particularly interesting in Elvira's case, as SMA is degenerative.  "It would be nice to stay as I am now and not get worse," she qualified, "but I'm fine like this.  I don't need to be made 'better.'"

Akash had the most intense response, arguing that asperges is not an illness and that a 'cure' for it would be a terrible thing; a way of wiping out a 'race' of people simply because they are different.  Five minutes of research says there are many with asperges who feel this way.

Back to me and my friend at the kegger.

The topic of how we define ourselves came up when my friend mused that he could not understand why people with paraplegia would fight for a cure.  Were they not just denying a part of themselves?  Isn't it better to accept yourself for who you are?

For me, this raised an interesting question.  Is your disability a part of who you are?  My first knee jerk response was 'hell no.'  I don't think anyone should be defined by their disability.  But then, thinking about it, I realised that ME/CFS has fundamentally changed who I am as a person.

Having ME/CFS has given me new perspectives and a career path I did not plan for.  It's increased my capacity for empathy and my passion for human rights.  It's also brought a lot of frustration and depression into my life, both of which impact upon the way I deal with the world.  It's altered my hormone balance, making me more likely to cry and have panic attacks.  I also experience 'irritability' (yes, it's a symptom) when particularly unwell, and I've never been sure if this is a result of altered brain chemistry or just impatience with other people when I have my own problems to deal with.

But does any of this make CFS itself a part of who I am?  Is it now a fundamental part of what makes me me, or is it an external factor which has played a part in defining me?

I've talked a bit about acceptance of disability before, or at least, acceptance of level of ability.  In the case of ME/CFS, I think it's vitally important that family and friends accept your physical weaknesses without applying pressure to get better, because despite there being no cure, there is still an underlying cultural belief that healthy living will fix people with CFS.  It's a terrible assumption as it places blame on the ME/CFS sufferer when recovery does not occur.

Acceptance for my friend at the kegger is a different animal entirely.  The erroneous cultural assumption he faces is that people with cerebral palsy are helpless and incapable.  With CP, fighting for acceptance usually means fighting to make people acknowledge your capabilities, and to provide an accessible landscape on which equal opportunity may be achieved.

In keeping with our conclusions in the No Limits cast meeting, the loudest voices in ME/CFS advocacy tend to fight for medical recognition and research funding, while people with CP (at least in my experience) are more about social inclusion and assistive technology.

In both cases, we still have a long way to go.

For anyone familiar with disability politics, the ME/CFS approach to advocacy represents the medical model of disability, while the CP approach is more inherent in the social model.  In the Australian disability sector there has been a real push toward the social model over the last decade or so, and it's been exciting to see the progressive changes finally taking place as a result.  Tired of being told that they are 'wrong' and need to be 'fixed', people with all kinds of disabilities are now proclaiming that they are what they are and communal acceptance of this is paramount to achieving true equality.  If there is nothing wrong with the person with the disability then it is society that needs to change; to step up and make itself accessible to all people.  This way of thinking increases self esteem, quality of life and access to opportunity for many.

But do we need to subscribe to the idea that disability is part of who we are in order to support the social model?  It's complicated because creating a philosophy that rejects medical intervention and embraces disability pride has given ideological support to the push for social justice.  Seeing disability as a 'culture' rather than a situation makes equal rights easier to campaign for.

But is disability a culture?  Is it something to be proud of, the way we take pride in our ethnicity, for example?  A disability, by definition, is the inability to do things that the majority of other people can do, whether that is physical, intellectual or social in nature.  Certainly it's nothing to be ashamed of and makes you no less valuable as a person, but it makes me a bit uncomfortable to think that people are defining themselves on this measure and counting it a positive thing.  To me, it's a circumstance, nothing more, and circumstances can be changed without rejecting your identity.

On the other hand, would changing people so they are no longer classified 'person with a disability' threaten their sense of belonging to a community?  Would it decrease diversity in our society?  Certainly the collective experience of our community would become less varied.  Is rejecting a hypothetical 'cure' on this basis justified then?  Life is boring without diversity and 'normal' is a silly concept, so I see the merit in this way of thinking.  I would hope though, that anyone actively rejecting a 'cure' on this basis, would also be willing to reject government financial support based on being a person with a disability.  I'm all for self sufficient people of all kinds of abilities if that's what makes you happy.  I'm also all for the NDIS, pensions and ISPs going to people who need them (and there are people who need a lot more than they currently have) rather than people choosing to remain dependant on principle.

If the cure for ME/CFS was discovered tomorrow and I was offered the magic pill, I would take it without hesitation.  So would anyone else I know who lives with CFS.  Unfortunately, due to bad press and lack of a single diagnostic test, we are often falsely accused of wanting to have a disability, or of having a psychological desire to identify ourselves through illness.  It's a common assumption that can lead to derision from medical professionals, maltreatment and, in a few recorded cases such as that of Sophia Mirza, death.  This, perhaps, is the reason I don't have a lot of patience with the idea of disability as part of personal identity.

But what if a cure has yet to be found?   Should we spend all our energy trying new pills and untested treatments?  Should we travel the world hunting for the magic bullet, the panacea that will make us feel whole again?  This is the inclination of many people with acquired disabilities.

My personal view is that while the efforts of those who devote themselves to fundraising and research are admirable, there is always the risk of letting the quest for recovery become an obsession.  I remember thinking, over and over again, for the first eight months that I was ill: "When I get get better, I will ... "  I spent a lot of time obsessively searching google for anything that might help me and was presented with a myriad of expensive and unproven options.

Looking back, I was in denial: the first stage of grief.  The last stage, of course, was acceptance, and accepting that I would probably not recover helped me to live a fuller life in the moment.  In the immortal words of John Lennon: "Life is what happens while you are making other plans."

But do we need to reject the medical model entirely in order to achieve positive social change?  Personally, I think not.  We don't lose our identities by using diet and exercise to increase our abilities, so why should medical procedures doing the same be any different?  We can commit to making our society fair and accessible for all whilst still aiming to meet our full potential.  The models don't have to be mutually exclusive.

Of course, there is still the issue of mind altering drugs used in cases of autism or mental illness (coming back to Akash's comments).  Psychiatric drugs are not necessarily a bad thing in my opinion (I've had too many friends benefit from them to take that stance), but I do agree that the issue of what comprises 'self' is a lot more murky in these waters.

When it comes down to it, I think the identity issue really stems from the fact that we have drawn an arbitrary line in the sand between people with disabilities and people without.  We picked a point on the scale of 'ability' and said "you are all on that side, and we are all on this side."  We did this to identify people who needed support, but it is divisive, creating an us and them.  A 'normal' and 'abnormal.'   And once you've identified as one of us, it's hard to imagine becoming one of them.  Whether it's by acquiring a disability or being 'cured' of one, you feel that something is being compromised by crossing to the other side.

For this reason, I am a fan of the Australian Aboriginal approach to disability, because in traditional languages there is not even a word for 'disability.'  No one can self identify through the concept and no one is 'othered' by it.  Some people can do some things, some people can do other things, we all acknowledge each others' strengths and weaknesses and work together to get on with our lives.  It gets more complex than that of course, and I encourage people to learn more about it, but it's the most inclusive approach I have ever encountered, and I think we can all learn a lot from it.

I'm really interested in hearing people's thoughts on this.

Friend from the kegger?  :)


  1. I think the mainstream's victim-blaming of people with chronic illness has almost nothing to do with disability rights attitude toward disability and disability pride. I definitely consider myself to be part of disability culture, active in disability rights, AND I would dearly love not to be exhausted and in pain all the time. I would LOVE to be able to exercise, and to be in public spaces (I have MCS, too), and on and on. All the bullshit about "secondary gain" which has been slung at MCSers and PWCs is not coming from people who have the first clue about disability culture. It's coming from people who have monetary gain to be made by discrediting our realities.
    I do think there's a big difference between a congenital disability (or one you have since childhood) and one you acquire as an adult, in experience.
    Based on my experience and that of my friends who all have multiple disabilities, it is the most recent disability that we hate the most. I got CFS and MCS in my mid-20s and am quite used to them by now. I got Lyme disease in my late 30s, after I'd built a life around accommodating MCS/CFS, and I despise Lyme with every fiber of my being.
    I have a friend who is a partial quad and hard of hearing since birth. Then she started losing her eye sight. Then she developed MCS. She is now deafblind and a full-time wheelchair user with MCS, and she says MCS is by far the worst disability. If she could get rid of only one disability, it would be the MCS.

    1. So it's not just the issue of whether it is acquired or not, but the length of time spent adapting. Isn't that interesting. Hypothetically speaking, if I were to wake without sight tomorrow, I'd probably find that a lot more frustrating than MCS. But perhaps that's only because I've had MCS for over 6 years and have learned how to cope with it.

  2. I completely agree that it depends on your disability, its symptoms, and how long you have had them. I have been ill my entire life and have learned how to accept and live with my Lyme, MCS, fibro, and GI issues. I also would not be the person I am today without this issues. However, I would give ANYTHING for a cure. The physical symptoms are something I can deal with, but, like you, I have irritability and mood swings as one of my symptoms (if you ask me it is 100% a result of altered brain chemistry, and I have 25 years worth of proof). While these mood swings have made me a much more caring person, I never want to have to go through another one - and the only way that will happen is with a "cure"
    Very interesting question though, I had never really though about it until now.


Related Posts Plugin for WordPress, Blogger...