Disability is a horrible word.
Because it is an antonym of abled. It’s a negative and the word has therefore bothered me for 35 years.
In 1981, I felt out of a tree at the age of fourteen and snapped my spinal cord at T12/L1. I would be paralysed for the rest of life. I could no longer play my beloved football, I could no longer run, I could no longer walk and my lower body felt alien.
Welcome to disability.
And yet, once you go through the five stages of grief; denial, anger, bargaining, depression and acceptance, a much better world finally opens. Together with family and friends, we soon decided to focus on what I could do, and no longer regard what I could not.
My new mantra became ‘No Excuses’ and I became determined to succeed despite my physical impairment. But after my university study of Industrial Design Engineer it was almost impossible to get invited to a job interview.
I couldn’t understand it. Here I was; a Paralympic gold medal winner, a masters degree and I was as fit as hell. Where were all these political and professional promises of inclusion? And at the same time, I had all the so-called experts advising me that I didn’t need to work as there were benefits. Little did they realise that this simply numbs achieving the higher echelons of Maslow’s pyramid, of esteem and self-actualisation.
No excuses, I kept telling myself and after hundreds of letters I started my eagerly awaited professional life at Philips, be it under a Work Opportunities Program against minimum wage. I didn’t mind. As long as I could show my talents I knew I would get more opportunities. It proved to be the kick-off to a successful career. Since then I’ve held various roles in Product Marketing and Strategy Management at Philips, GE and Tyco and eventually became President EMEA at Elo Touch Solutions.
This year I’m approaching 50 and I realise the paradox I’ve been living. Once in a professional environment, a disability is much less relevant. The tie and suit, the business card title and the clear value and contribution all determine a good level of inclusion. So why am I still considered a rarity in the business world? Why does the bond of inclusion more or less fall apart when out and about on the street? Why are not more persons with a disability at work? Why are the statistics so bad…?
Almost one in five persons have a disability, but business leaders ask, ‘but where the hell are they?’ In all my years of experience I have never seen a CV with a disability either. So there must be something wrong.
As with all statistics, care should be heeded when applying. As would be expected, the number of persons with a disability rises with age. 25% are over 74-years and 45% are over 64-years. These remain important as market potential, but less so for employment. Further, 80% of all persons with a disability are so called invisible. The fastest growing disability is mental, constituting half of all disabilities. Of the working population, only some 0.2% are in a wheelchair. So that explains at least a little why we don’t have traffic jams in our office corridors.
The problem with subjectivity is that some wear their disability like a medal on their chest (those are the ons with loud stickers on their car proclaiming their status), whereas others will denounce it in shame. And there are multitudes of flavours in-between. The label of disability is like the yellow star of David as it opens the door to judgement and ablism (be it negative, or sickly positive). In a survey in the UK in 2011, 38% of recipients said they considered the disabled to be a burden on society. 65% said they avoided persons with disabilities.
I’m not ashamed of my physical impairment, in fact I’m proud of it. It’s part of who I am. But if someone were to ask me the question, then my answer will depend on the situation. If it means an improved tax return, or a parking permit, then yes I’m disabled. In most other cases the answer will be ‘No, I’m not disabled, I just can’t walk!’
Another way of looking at disabilities and the effect on the economy is to look at the number of persons with a disability benefit. On average across the OECD countries, some 25% of persons with a disability receive an allowance. Only 40% work (compared to 75% without disability), but according to the OECD, persons with disabilities should not be neglected as this latent workforce will be needed to fulfil the future expected deficit.
Once granted, only 1-2% of persons receiving a disability benefit find their way back to employment. This tells us that our labour programmes are sorely lacking. Approximately 95% of public spending on disability is just ‘giving’. Only 5% is used for re-integration programs, labour stimulation and more of the sort.
The Cambridge dictionary states that a disability is: ‘An illness, injury, or condition that makes it difficult for someone to do the things that other people do.’ So if someone can’t drive a wheelchair, if someone doesn’t know how to use a white cane, if someone cannot understand sign-language, they are all disabled?
The Oxford dictionary may be more acceptable as it states: ‘A physical or mental condition that limits a person’s movements, senses, or activities’. However, this is still very much open to interpretation. Let me give you an example: if I cannot take the stairs, but I can take the elevator, is it relevant to get to the first floor? Is the absence of an elevator due to my handicap or is the environment disabling me? Perhaps the definition should read: ‘A situation
physical or mental condition that limits a person’s movements, senses, or activities’.
I am a pragmatic person, so I understand that adapting environments costs both time and money. But there’s no excuse for new buildings or renovations. Architects that do not incorporate an inclusive design are simply not creative enough. And if laws cannot prevent ignorance, then economic opportunity will be lost to alternatives elsewhere.
Disability is like a slippery fish. It’s not necessarily coloured, it doesn’t necessarily wear bras, it believes what it wants and it can be temporary in nature. In fact, all disabilities can be considered outliers of the Gauss curve. For the statisticians amongst us, the tail-ends of a normal distribution. But then again, each aspect, property or behaviour of a person could be mapped across a multitude of curves and most probably each one of us will be in a multi-dimensional outlier somewhere. The conclusion would therefore be that everyone has some form of disability.
So why is there this collective name? Why are we all so determined to give it a label?
The thing that binds persons with disabilities is that we are all outcasts of the so-called ‘norm’. ‘The others’, as Cambridge calls it. There’s a old bedouin saying: Me against my brother. My brother and I against my cousins. Our family against the world. We’re like the X-men, a collection of mutants dealing with ‘abnormality’ and fighting discrimination and intolerance.
So who determines this norm?
Ignorance does. In today’s world, appearance trumps talent. So while I don’t individually like the word disability, collectively the word has a function and is a strong message enabler. But only as long as it is needed.
In the perfect world, and I am convinced this will arrive in the future, talents and competences will outweigh physical and mental impairments and then the word will lose relevance and ultimately disappear. When that time comes, I will not be considered disabled. Similar to wearing glasses to compensate myosis, I’ll have wheels to compensate paraplegia.
And that’d be kinda cool…