Part of my coping mechanism has always been to remember the great number of people who are experiencing much worse than I – ‘It could be worse’ ‘keep a stiff upper lip’ or keep calm and carry on’. Now I realise that minimising the physical realities of living with a disability in this way is actually a form of denial in itself. Focusing only on the social side of disability may come at the expense of recognising our physical health and the very real pain and fatigue we all feel.
Friends and family say they are impressed that I ‘don’t complain much’. This is a back-handed compliment. I don’t talk about my disability because that would be seen as complaining and I would feel embarrassed and ashamed. After all, nobody wants to hear how you really are. To avoid judgement, disabled people should keep quiet about their health. An ableist society puts us under great pressure to fight, to show grit, steel and courage instead.
This dilemma catches many disabled people out when applying for benefits they are entitled to. Rightly, disabled people want to focus on what they can do. To not be defined by their disability. Cruelly, the usually underqualified DWP assessors only award points for what claimants can’t do. Since the Government’s transfer of people from Disability Living Allowance (DLA) to Personal Independence Payment (PIP), over 100,000 disabled people have lost their mobility vehicles and a further 200,000 who used their mobility allowance to cover taxis or general care needs to live independently have lost that too. This is an absolute disgrace and shows how badly our society needs to reconsider disability.
My own approach was challenged in 2020, when a friend presented a video about her life with ataxia at our virtual conference. As she spoke openly about her care needs, I began to think “Whoa, this is way too much information” and “I don’t need to hear all this.” But it made me consider the extent of my own efforts to cover up my own disability, and why I was doing it. I think it is right that people know the truth. I don’t want sympathy, just recognition that it is ok to be disabled, that my life, though different and difficult, is as valuable as any other. So thanks to Emma B, for the very first time, here is a full and frank my description of how my disability affects my life. Prepare to be surprised!
I was diagnosed with Friedreich’s Ataxia, a progressive and incurable neurological condition as a teenager in 1991. Today, my energy is limited. I feel tired all the time. My wrists, elbows and shoulders ache from the strain of twenty years of propelling myself in a wheelchair. My transfers are generally poor and require a lot of concentration. I fall a few times a year. Although I have my feet attended to by a podiatrist and need some help getting dressed, I can manage all my own personal care. My scoliosis (curvature of the spine) makes sitting or lying down uncomfortable. My poor circulation means my hands and feet are cold through Winter. In the Summer, my feet swell up and sweat soaks my back and seat from sitting in a wheelchair all day. I have no reactions to speak of but jump out of my skin and have an adrenaline-fuelled fight-or-flight reaction to both loud and sudden noises.
I have a hearing loss known as Auditory Neuropathy. I can still hear sound clearly, I just cannot separate the frequencies of different sounds. For example, in a noisy restaurant, I cannot hear a person next to me talking, all I can hear is the background noise. This kind of hearing loss is linked cognitively impaired perception of speech. I have always been frustrated at my inability to follow what people who have difficulties with speech are saying and have always found it difficult to focus on details and remember names. I never understood what depression was, but now I feel its pull when I am at my lowest, perhaps short of sleep or fighting off illness.
My eyesight is stable, but is now at the very limits of what corrective lenses can do. Difficulty focusing (Nystagmus) makes watching quick movement difficult. My speech is slower and slightly slurred and I can manage to write a signature, or single words which soon become unreadable, but nothing more.
As I eat one-handed, I use my other arm to keep myself upright and find cutting food difficult. I need to concentrate on swallowing or I’ll choke. My involuntary leg-spasms make for the most interesting dinner table disruptions. I have difficulties with urgency when toileting and need to be careful what I eat and make sure I drink enough water. Fatigue and poor mobility coupled with middle-age and two children make sexual fulfilment much more of a challenge.
My middle-aged body just cannot do all the things it used to, and certainly not as quickly. I have streaks of grey in my hair and a lot of white in my beard. Instead of being bitter about the things I can’t do, I need to recognise them and appreciate the things I can do. I use a speech-to-text programme to help me write for sustained periods. I listen to music and audiobooks, watch TV and film, play on my PlayStation and can use computers and phone apps adequately. I get out and about on my trike and I exercise with my Thera-trainer for ninety minutes every day. This helps with my digestion and cardio. I sleep fitfully enough. I am grateful to my Wife, Helen, for enabling much of my independence.
You might think my life sounds terrible. But it is my life, and I’m used to it. And that’s the point, we all have challenges, but we should recognise them, not ignore them. We are set apart by how we face them. I live a full and rewarding life with mine, and that is alright.
Richard Brown MBE