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The extra costs of disability – why it’s time to be bold

Today marks the launch of an important new report from the Extra Costs Commission, a body set up to look for ways to relieve the extra costs disabled people face as consequences of living with their disabilities. What can you do if you’re affected by the issues discussed?

Disability can be a minefield without any extra financial implications, but the truth is disabled people often have extra costs to contend with, such as specialist equipment or higher transport costs.

Here, Robin Hindle Fisher, the chair of the Extra Costs Commission, tells you his personal story, and why now is the time to take action on higher costs. 

How the Extra Costs Commission report moved me

One of the key recommendations of the report 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’, a 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.

Why we should reclaim disability

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’.     

The costs of disability

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.

The nature of the extra costs of disability vary 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.

 

Are you affected?

If you are disabled, or care for someone who is, Scope provides free, confidential advice and support.

Are you affected by the extra costs of disability? Did you know where you can go for advice?

This guest post is from Robert Hindle Fisher and doesn’t necessarily reflect the views of the Money Advice Service. You can find out more about the Extra Costs Commission and what they do on their website.

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