My Checklist for Living with Ataxia

Today is International Ataxia Awareness Day and people around the world come together to share their experiences and enlighten others about Ataxia. I have Friedreich’s Ataxia; I have written about my own life-changing origin moment elsewhere in my blog. In this post, I want to look at the wider concept of disability that people with Ataxia find ourselves struggling with after a diagnosis, how it can determine our quality of life and how we can break free.

I want to share the things that help me. I hope this doesn’t come across as preachy, I write for those like me, with Friedreich’s Ataxia (an incurable and progressive nervous disorder), although those with other disabilities may find this useful. This is my own take on living with Ataxia for 27 years and not the view of any organisation I represent.

• Educate Yourself: Understand disability and your rights.

Disability is truly terrible and beautiful at the same time. Being disabled changes our lives forever. Suddenly, we are plunged into a terrible position. We find our rights significantly weakened because we are now seen as sick, burdensome and tragic victims. At the same time, we are pressurised to get better, be inspirational super-achievers, be our own advocate and medical expert and prove how sick we are. Much of our media is responsible for the negative portrayal of disability and other minorities. If we can understand how disability works in our society; who the gatekeepers are and the barriers we will face and why other people treat us so poorly, we will be able to make the best use of our limited and energy to be ourselves.

Just as with any other group which struggles against oppression, disabled people need to understand and challenge that oppression themselves. For the last 100 years, sociologists have tried, and are still trying, to properly define disability and society’s attitudes to it. I’d love to talk disability theory[1], but I’ll keep this very brief.

The dominant ideology that is used to describe disability in Western Society is called the ‘personal tragedy model’. Unable to conform to the widely accepted norm and as a victim of cruel misfortune, the disabled person is given the ‘sick role’ and is excluded from mainstream society, denied many basic human rights and becomes the responsibility of Medical Professionals, until such time as they are ‘cured’.

So that’s what we’re all up against, how do we change it?

Disabled people and their allies began to realise that much of ‘disability’ is actually created by our society and disabled people are oppressed, similar to other groups who deviate from the ‘norm’. The Social Model of Disability exposes this and is liberating, like a light being switched on. All of a sudden it all makes sense. It is not about focusing not on the impairments we may have and curing them but holding a light up to a society that constantly fails us. Behind this process is a nasty prejudice called ‘ableism’, which I have written about elsewhere in this blog. The Social Model of Disability is a work in progress, but its core principle is empowering and once we adopt it, we can build a new relationship with ourselves and others and begin to push for change together. The following suggestions may help.

• It is not your fault. Accept it, lose the anger and move on.

Easier said than done. We may not be able to overcome our disabilities, but we can live fulfilling lives with them. Disability is a constant in our lives so try to focus on the moment. Keep your energies to manage day-to-day, pick your fights, being angry all the time is a waste of your precious energy and makes life difficult for those around you. As a ‘sick’ person has little or no privacy and people will behave like that toward you. They ask very personal questions that they have no right to do or give ‘help’ instead of offering it and expect our gratitude in return. It is infuriating, but other people won’t learn anything by being shouted at!

• Be Assertive: Stand up for yourself.

Unfair and exhausting as it is, you, and/or someone close to you, will probably have to become your advocate. We are taught to respect authority, never to question it. A lot of people with a condition like ours just accept what they are told. Don’t. You have to become a fighter, but choose your fights carefully. Tell professionals what you need them to do for you, question what you are told. Become an expert. A Doctor may have trained for 10 years or longer, but doesn’t have the lived experience you have. That training often means that Medical Professionals adopt a paternalist approach and may only focus on a cure, but some take a holistic view to disabilty. You cannot expect any of the professionals you come into contact with to have a good understanding of your condition. That’s ok, you’ll teach them.

My condition may be incurable, but there is an entire range of therapies, aids and activities that can significantly improve physical health and mental wellbeing. Take the responsibility for your own wellbeing. You manage the physical challenges of your condition. How you do it is no one else’s business. You’ll ask for help if you need it.

• Believe in yourself and others will.  

Other people generally have very low or no expectations of what disabled people can do. For every person who will encourage you, there are ten who will tell you exactly why you shouldn’t or can’t. You know who these people are. Your energy is limited and precious, you cannot waste it on people who don’t deserve it. Leave them behind. Making new friends is easier, you now have something in common with most people, oppressed. Surround yourself with people who truly believe in you and always believe in yourself. The kind of people that will support you as you decide what YOU want to do and can achieve. The kind of people that will tell you what we all need to hear in their dark times: you are not alone, you are loved, you are wonderful, and you are enough.

• Get yourself out there.

We can push against those negative stereotypes and low expectations, but we cannot carry that massive responsibility every day, it is far too tiring. Free from the pressure to conform with the expectations of our society, do what you can to become the change you want to see. Get active. Volunteer, fundraise, raise awareness, make friends, use Public Transport, go to events, go on holiday, go to branch meetings or Conferences. Join or set up a support group. Go on a date, get married, be a parent. Find the thing you love and do it!

There is so much more to us than an association with a ‘terrible’ medical condition with a Greek name; we are all beautiful.

Richard Brown

25 September 2019

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[1]If you would like to learn more about Disability, I recommend this book, Shakespeare, Tom, Disability (The Basics). Routledge (2017)