Introduction
Even before I contracted GBS I couldn’t dance. I tried, but I just ain’t got no rhythm. I am garbage at singing too. Are these disabilities? Be careful here; and think carefully before you answer.
We think of disability as applying to physical and sensory impairment mostly. This is because this is what we see. We use the term disability with meaning determined by what we are exposed to. This why promotions of disability awareness and covers of Disability Inclusion Action Plans show people in wheelchairs, with prosthetic limbs, or with guide dogs. We value unimpeded mobility and dexterity. Because of this, images of people whose abilities are impeded are representative of disability.
A Spectrum of Meanings
Images of people looking normal, but who might be deaf, have a degenerative disease or a psychological injury do nothing for us, because there is no sign of difference or disadvantage.
Here’s what the Australian Network on Disability (AND) says:
There are many different kinds of disability and they can result from accidents, illness or genetic disorders. A disability may affect mobility, ability to learn things, or ability to communicate easily, and some people may have more than one. A disability may be visible or hidden, may be permanent or temporary and may have minimal or substantial impact on a person’s abilities.
Although some people are born with disability, many people acquire disability. For example, a person may acquire a disability through a workplace incident or car accident, or may develop a disability as they age. There is a strong relationship between age and disability; as people grow older, there is a greater tendency to develop conditions which cause disability….
There is nothing wrong with this. It focuses on disability in an important context.
Let me cut and paste portions of the above:
There are many different kinds of disability that may affect [a person’s] ability to communicate easily. [M]any people may acquire a disability through a traumatic life experience. That disability may have minimal or substantial impact on a person’s abilities.
Fear of public speaking was once rated higher than a fear of death. Embarrassing experiences as a child can be actually traumatic, and lead to subsequent modifications of behaviour. As a child in grade 5 primary school, I resisted pressure to sing in the school choir. I didn’t want to, and it required time after school. I had other plans. The music teacher insisted I ‘audition’, and I refused on the logical grounds that as I had no intention of joining the choir, there was no point in auditioning.
The situation ended with the music teacher screaming at me to sing, and me flatly refusing. I would not budge. I was not going to join the choir and I would not audition. The price I paid for that determination was a traumatic reaction every time anybody urged me to sing. I freeze.
So, did I end up with a disability? For me the prospect of singing in public invoked the same fear that public speaking invoked in others.
I argue that disability is so normal we incorporate it into our culture. It’s part of our normal. The above AND definition says: “A disability may be visible or hidden, may be permanent or temporary and may have minimal or substantial impact on a person’s abilities.”
I want to clarify that a disability’s impact may not adversely impact the most socially valued abilities; but may substantially impact less valued abilities. This is the vital difference. Singing in public in workplaces is usually confined to birthday celebrations. Beyond the workplace, and outside Karaoke, the national anthem is about the only other public risk. For me my reaction to singing in public is low risk, even though the impact is profound.
We define people by valued social roles, and we define disability in the same way. When we meet somebody for the first time, usually the first thing we ask them is “What do you do?”. We could ask “What do you love?” But we don’t. We are conditioned to find out if they perform a socially valued role.
When Lack of Ability Becomes Disability
The question about disability becomes one of asking what ability, by its lack or impairment, would fit into a notion of disability?
Some people have poor hand eye coordination. Others are tone deaf. We could make a list of lacking or impaired abilities had from birth or acquired later. We would then create a ranking by context – vocational, social, or relational.
Normally what might be technically classed as a disability is dismissed as just a personal attribute or quirk. It is not classed as a disability in our normal discourse on the subject because it is normal – just part of the spectrum of being human.
The Scottish dancer and choreographer, Claire Cunningham, who uses Canadian crutches for personal mobility and dance, said that disability is part of the spectrum of being human.
But she meant the obvious disability, nor the normal kind. The reality is that some disabilities rear above the normal range because the normal world cannot accommodate them. In some cases, disability can be so profound that an individual cannot survive without consistent and loving care from many people. Other times a person may live with a profound disability that has no impact upon their performance of socially valued roles.
We tend to focus on disability in specific contexts – work and community access being two common ones. This can lead to us being blinkered, and not seeing far beyond the focal context.
Is Normal Inclusive?
We all know many people with disabilities. They are part of our normal. In effect, being ‘normal’ can simply mean you don’t have disability that impinges excessively on your day-to-day functioning.
Consider this. Long before disability became the social issue it now is, stairs had handrails. They were there to make the normal safer. If you couldn’t make it up the stairs with the aid of the hand rails, that was your bad luck. You were outside the normal range.
When we learn to see that disability has always been a spectrum, we can begin to think about how wide we want the band of normal to be. The normal of stair handrails excludes people in wheelchairs. It’s just not wide enough. But now we have ramps, and in that context the normal spectrum is wide enough.
Conclusion
We design the human world. So, we have a choice about how wide the normal band will be. If we make it wide enough to include everyone, we will have to rethink physical, cultural and system parameters and what operates within them.
We decide what is normal. We set the boundaries as barriers or as enfolding arms.
True inclusivity is the universal normal.