Robin Hindle Fisher is Chair of the Extra Costs Commission, a year-long independent inquiry into the extra costs that disabled people face. As the report is published today, Robin says, “working on the Extra Costs Commission has been emotionally moving – it has helped me realise that I spent the first 54 years of my 55 year life effectively denying that I am disabled.”
Over the past year I have chaired the Extra Costs Commission, an independent body set up to look for market-based ways to relieve some of the extra costs that disabled people face as consequences of living with their disabilities.
The nature of these costs varies enormously across different conditions and from individual to individual. Examples include the costs of specialist equipment, such as wheelchairs, additional clothing, higher transport costs and higher energy bills, due to increased needs for heating caused by immobility.
The disability charity Scope estimates that disabled people have to spend an average of around £550 per month on these extra costs, just to be able to live the same lives as others. This compares with average welfare payments of £360 per month – leaving a substantial gap that disabled people have to finance. It is this gap that we have sought to reduce.
I have enjoyed my involvement with the Commission enormously and I believe we have set out a number of recommendations that will have significant impact. One of the key recommendations is that disabled people, of whom I am one, should be prepared to be “bold and loud” about their disabilities. The Commission believes that this will help to make the spending power of the disabled sector, the so-called ‘purple pound’, an higher profile consumer phenomenon – and eventually drive down costs.
I have found this “bold and loud” aspect of the Commission’s work emotionally moving. I have realised that I spent the first 54 years of my life (I’m now 55), effectively denying that I am disabled. What was it that drove me, a moderately ‘successful’ person (in terms of academic attainment, career advancement and material reward), to feel that I could not be seen as being ‘disabled’?
For a long time I assumed the answer was specific to me – maybe the result of my up bringing, that ingrained a strong ‘you are as good as anyone’ ethic in me. It affected me in a whole array of ways – how I dressed, how I strove for badges of conventional success, how I chose to interact with other disabled people – I didn’t. It certainly affected how I explained my disability to my children when they were young. Fearing that they would be teased, or worse, about their father’s physical deformities (they never were), I described myself as ‘special’, not in an elitist sense, but meaning just ‘different’.
Working on the Commission has helped me understand that I am not unusual. Many disabled people avoid the term, I guess fearing that they will be labelled by society as inferior to the able bodied majority. This denial is completely understandable – when I was growing up in the ‘60s and ‘70s disability was stigmatised and society assumed that you were helpless, and quite possibly hopeless, if you were born or found yourself with physical, let alone mental, health issues.
Although the stigmatisation is massively less pervasive now than it was 30 or 40 years ago, it is still having hidden effects. One of them is the reluctance that many of us still feel to accept the badge of disability. But I now think this reticence is serving us badly. It certainly reduces our collective consumer influence – and thus contributes to the extra costs we face. Hence our call to disabled people to be “bold and loud”.
Perhaps even more importantly, I believe our reluctance to be identified as ‘disabled’ is perpetuating the very stigma that we seek to avoid. I think we should take our lead from the gay and lesbian community and be prepared to ‘come out’ that we are disabled. I feel that until we do that, disability will remain ‘inferior’ in some people’s minds, ‘special’ in others’, rather than what it should be – just another version of ‘normal’.
Read the Extra Costs Commission report, published today.