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Disability resistance and resilience

OMser Helen shares her experience of identifying as 'disabled' and how she explains each person with MS has a unique story.

There is a scene in the television series The West Wing when the American President, Jed Bartlet, is forced to tell his senior staff that he was diagnosed with MS  eight years ago. His colleagues are confused, appalled and angry at the President’s concealment. Bartlet reassures them by saying that he has Relapsing Remitting MS, which he says, is the ‘good’ kind of MS. His relapses are infrequent and clearly he is a high functioning individual, adept at hiding the fact that he has a chronic disease in order to maintain the appearance and credibility of a powerful man.

If Relapsing Remitting MS is the ‘good’ type of MS, according to President Bartlet, then Progressive MS is obviously the ‘bad’ type. Of course, the television dialogue is played for dramatic effect. But beyond the political soap opera, Bartlet’s distinction between ‘good’ and ‘bad’ MS is grounded in widely held assumptions about what makes a good life and who is a strong person. It also says a lot about the impact of disability on how we perceive ourselves and how we are perceived by others. For President Bartlet, it’s a question of political optics: what’s visible and what’s not? He believes that using a wheelchair will be viewed as a sign of weakness, but, surrounded by smart aides, he can cover up an episode of cognitive fog during a military emergency...

Receiving a diagnosis

I was diagnosed with Primary Progessive MS - the ‘bad’ type - in 1997. For a number of years, I too became skilled at hiding my symptoms, especially at work and in social situations. As a university academic, I could put on a good performance in a lecture or a faculty meeting; afterwards, I locked my office door and sank into my chair with exhaustion. With family and friends, I put on a cheerful face and acted the life and soul of the party. Then I would take days to recover.

As my MS symptoms advanced, this performance of normality became increasingly impractical and self-deceiving. I applied for early retirement on medical grounds and, for the past few years, have adopted a consciously slower and gentler pace of life. I have taught myself to say ‘no, thank you’ as simply and honestly as I can. It’s easy to hide behind a socially acceptable excuse for saying ‘no’, but avoiding the real reason why you need to go to bed at 9pm, only feeds the prejudice that equates human value with physical energy. I am learning to take responsibility for prioritising where and how I use my store of vitality, and my life is happier and healthier as a result.

Remaining positive

Nowadays, I am positive about self-identifying as disabled, although my visible and invisible symptoms provoke diverse reactions among both friends and strangers. People cannot ignore the fact that I am using a walking stick or a wheelchair, but they rarely connect mobility impairment with less obvious evidence of dizziness, lack of coordination or tiredness. In my experience, being visibly disabled brings out the best and the worst in others. For every person who is respectful, empathetic and asks me a question, someone else is makes inappropriate assumptions about my physical and mental capacity. When I am in my wheelchair, some people still talk to my ‘pusher’ rather than me. It’s such a cliché of disabled life, but like all clichés, it is, alas, true.

I decided to identify as disabled when I realised that this was an act of  honesty, self-compassion and strength. It was (and is) not easy, but for me, it is a powerful way of describing and managing my condition. I also believe that living well with disability is compatible with the philosophy and principles of Overcoming MS. I care for myself both by following the OMS programme and by describing myself in my own terms.

Having lived with Primary Progessive MS for over twenty years and followed the OMS programme for more than ten years, I am an expert in my own lived experience of this disease. I am also a realist. I know that I have gained enormously from following a programme which combines good, practical advice for sustaining my health with the empowerment that comes from taking positive action.

Let’s be positive about the value of the OMS programme for everyone with MS. But at the same time, let’s be honest about the unique impact of MS on each individual. If we think that living well with MS is primarily about the avoidance of disability, we are both de-humanising disabled people and undermining our resilience in the face of future adversity. Instead of confusing positivity with the exclusion of disabled experiences, let’s embrace our diversity and expand our perception of human strength and value.

And let’s agree, there’s no such thing as either ‘good’ or ‘bad’ MS.

primary progressive MS
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Lucien

Thanks so much for this Helen! The West Wing reference made me think a lot about my own public disclosures regarding my MS, attempting to present a semblance of normality, control and success in the face of adversity. These comments really hit home “became skilled at hiding my symptoms”, but then the “performance of normality became increasingly impractical and self-deceiving”.... Eventually I hope I can also identify as disabled which as Helen explains would be an act of "honesty, self-compassion and strength.” It is a steep hill, I am trying my best. Again, thanks Helen for putting this into words so clearly.

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