A guest blog by Martyn Sibley
I have been what is known as “disabled” my whole life. Oh, how we love labels! I have a genetic condition called Spinal Muscular Atrophy, which means I’m about as physically useful as a chocolate teapot.
On top of this potentially dire situation, let’s look at my disability shopping list:
- Accessible housing: Very difficult to find, never cheap and usually requiring ramps and adapted bathrooms/kitchen after moving in.
- Equipment: Electric bed (for comfort and pressure sores), electric wheelchair (for independent mobility), a hoist (to lift me), shower chair on wheels (to not smell), kitchen gadgets (a Kettle tipper, for example), and much more.
- Social care: The recruitment, training and salary costs of employing people for my independent living needs. Tasks include; dressing me, personal hygiene, house chores, using the toilet, going to work, seeing friends and turning me at night. Plus their additional costs when on shift (food, accommodation, travel, leisure).
- Health: Physiotherapy and swimming are very important. Prescriptions for antibiotics are required more than average in winter.
- Other living costs: Higher utility bills to stop winter colds, charge electric equipment and for higher water usage. Costs of servicing equipment. Accessible transport is often more expensive than inaccessible options (see London’s tube map). Accessible holidays have a higher mark up too.
I could go on and on…
Fortunately, parts of this are covered by government funds. I get support in certain areas because I’m more “disabled” than average, because I understand my rights, and in some ways because I’m “lucky” with the postcode lottery we play.
If anyone narrow minded goes crazy to you about the costs of disabled people on the government, please tell them this: Unless death or social isolation is your thing, investing in us is not just right, but also better for everyone.
From being independent we are healthier and happier, saving future costs of hospital admissions and GP time. We can work, spend our money in the economy, contribute tax and share our skills/knowledge/experience for others to use. We also employ people with the social care money who also spend in the economy, pay tax and are valuable assets to society.
Despite the government funded support, there is a lot of costs not covered. Granted the Disability Living Allowance is in recognition of our extra costs. Unfortunately the maths still shows that we struggle to break even. And when we do succeed, the system takes it back again.
For me there are mental and emotional costs of all the bureaucracy too. The form filling, meetings, reassessments, employment responsibilities, silly rules, threats of budget cuts and actual cuts. All on top of trying to just live a “normal” life.
Finishing on a positive note
Beyond the social stereotypes we face, and partly because of the support I have; I attended mainstream school, had non-disabled and disabled friends, did everything my family did, went to university, got drunk, lost my virginity, learnt to drive, graduated, worked in Human Resources and as a fundraiser for Scope for 6 years, went onto co-run Disability Horizons, travel the world and change it in my own little way.
On the one hand I hope my experience shows what is possible with the rightful funding, resilience, and a positive attitude. Equally I want to show the unnecessarily difficult reality of being disabled in 2014. Furthermore the possible regression we are facing going forward with policy suggestions. Only next year am I given big fears, doubts and worries about my personal finances and disability support package once the Independent Living Fund closes.
I’d love to hear about your life ambitions, hurdles you’ve overcome, your higher costs of disability, and achievements despite the struggle.
What are your experiences of extra costs? Let us know in the comments below or find out about the Extra Costs Commission.