The Disabled Able


...And admitting to yourself you need a wheelchair isn’t easy.  When when you do, your very fabric as an individual can begin to unravel. Most of us with Invisible Illnesses including Ehlers-Danlos and Hypermobility Spectrum Disorders  (EDS/HSD) have struggled desperately to get medics, friends and even family to understand and appreciate our problems and pains. 

Once we’re in a wheelchair, the focus of our fight can change. No longer striving to have our challenges seen, while some will never believe us, others concentrate on the apparatus too much, and the challenge becomes getting them to see beyond them. 

The Enemy Within
Sometimes we can be our own worst enemies. The psychological impact of needing a wheelchair, whether suddenly because of an accident or due to a slower progression of a degenerative condition, like EDS, can be massive – and traumatic.

Even though mobility may have been difficult or even impossible for years, reconciling with the fact you need to use a wheelchair is admitting that your body is dis-abled and it’s easy to feel defeated. That EDS (or whatever injury or illness you have) had ‘won’. In the early days, it can certainly feel like you have no control over your physicality, or your future. But if we avoid using a wheelchair when we need to because of the ‘disabled’ label, then are we not guilty of the kind of discrimination the EDS Community and the disabled population at large have rallied against for a long, long time? 

A discrimination that seems more rife than ever in our society in the shadow of Disability Benefit/Insurance Payment governmental and corporate changes. In the UK, no sooner were we emerging from one storm, the government and our unelected Prime Minister are again discussing cutting the Benefits disabled people rely on for survival. Although these terrible moves have prompted support for the less able parts of society, the dividing lines are still blurred on a deep and often personal level.

Saying to yourself that you need a set of wheels isn’t about defeat and helplessness. It’s about accepting your body and taking charge of your mobility as best you can. If only it were quite that simple…So many factors feed in to our psyche when it come to this. The last few Paralympics and positive media promotional campaigns have been instrumental in changing the way the public views ‘Wheelies’.  

In the paper Assistive Techonology and the newly Disabled Adult: Adaption to Wheelchair Use (Bates, Spencer, Young & Rintala, 1993), the authors talk about two 1987 studies (Zernitsky-Shurka and Hastorf et al. **), where actors were in wheelchairs instead of mobility-challenged people, which only further explored the way people respond to the kit rather than the person sitting in it. In other words, they saw the metal, not the flesh and the person inside the skin. Indeed, reports of intelligent, adult Wheelies being ‘infantilised’ (where they are spoken to as if they’re a child) or being ignored completely while their companion is addressed on their behalf, are all too common. If this doesn’t happen, other things do. 

From the same study named above, it’s been found over a period of nearly thirty years that 'Persons without disabilities show symptoms of social strain around persons in wheelchairs, including short interaction times, excessive physical distance, and negative self-talk.' (Dawson, 1990; Fichten & Amsel, 1988; Fichten et aI., 1991; Hastorf, Wildfogel, & Cassman, 1979; Kleck, 1968). 
''I’m too disabled to be part of the ‘normal’ world, but not disabled enough to be totally acceptedin that 
other realm either.''

- Holly*, #ysuTribe member
Negative self-talk. That’s a dangerous and slippery slope. Combine that with experiencing social strain and altered non-verbal communication, you start to understand how complex wheelchair use can be. Theses studies also illustrate how able-bodied people who need no mobility aids are not alone in having the most negative view of wheelchair use. 

Shockingly, people with severe disabilities displayed equally negative behavioural habits and views. As established by a group of studies cited by Bates, Spencer, Young and Rintala (1993) again; 'Persons without disabilities and persons with severe disabilities held the most negative attitudes towards wheelchairs.'
Antler et aI.(1969), Zer-nitsky-Shurka (1987) and Fichten et al. (1991) found 'wheelchair users preferred the company of persons without disabilities to that of other wheelchair users.' 

What hope is there in terms of disabled people being accepted as normal people and the same as their able counterparts if even we prefer to avoid our peers’ company? No wonder individuals who can walk but who use a wheelchair too talk about being lost between social groups. Holly* knows this feeling only too well.

“Because I have the ability to walk even though I need a wheelchair, I don’t identify with or fit in the two worlds – I’m too disabled to be part of the ‘normal’ world, but not disabled enough to be totally accepted in that realm either. That said though, I sit on the disabled side of the fence when it comes to solidarity."
This isn’t this #ysuTribe member’s only brush, by any means, with stigmatization. She’s been refused entry to public transport a few times purely because of her electric wheelchair, and family and friends have wielded hurtful words on many occasions. 

“Two thought is was funny to stand over me and mime feeding me out of my dog’s bowl. I had to move by kneeling and then gently sliding myself along the floor. I was trying to get to my medication cupboard for pain relief. I’ll never forget how degraded I felt.   Another time, I was in the car with my mother. She parked in a disabled spot while there were loads of empty alternatives nearby. I pointed this out to her, she replied ‘Well, I’ve got one in the car, haven’t I?’. 

I can’t imagine dehumanlising my child and an entire group of society in one action and nine short words like that.”  

"Two 'friends' thought it funny to stand over me and mime feeding me out of my dog’s bowlI’ll never forget 
how degraded I felt."  

-Anon #ysuTribe member
Yes, she counted them, such is the deep level comments like this strike and settle upon. To the physically able the odd comment here or there may not seem like much. But amplify that across months, years, decades and countless social interactions, it builds up. 

While drivers still block drop-down curb and force chair users on to roads, while shops still have steps, and councils and construction companies still build sloping pavements, it’s safe to say that we do not live in a Wheelchair World. Without a change in attitudes, on both sides of the equation, we never will live in a world where disability is not seen as inadequate. 

Ultimately, the advice to all Wouldbe Wheelies out there? Do it! Just do it. Waiting won’t lessen your initial dread or sense of awkwardness, helplessness, defeat or humiliation. Neither will it dilute the strange public behaviour you’ll come across like the sympathetic stares, the accusatory stares…

There is always an idiot who will say or do something upsetting and dumb. Unfortunately, you can’t reason with ignorance, so just graciously propel yourself away and leave them to their so-called bliss.

What it will do, though, is let you speed on the downhill runs, and that’s better than an uphill struggle.
Written by #ysuWords.
email for syndication permissions.
An animated banner showing title images from and linking to #YouSeeUs' Gastroparesis Special In HEDS Up!.
Share by: