WHAT DISABILITY?: Spend to mend

Well guys, we did it! Kasia, Martin and I traversed the UK from John O’Groats to Lands End. I hope you’ve been following the articles on Disability Horizons, the videos on my blog, the flickr photos and social media updates. The planning and executing of this trip was exhausting. However the media and the public really grasped the message that we carried.

I do not want to repeat the magnitude of what a personal challenge this was. This has been documented sufficiently for the Britain’s Personal Best project (www.whatsyours.org). Instead I want to share my reflections on a wider social scale.

I am so passionate about disability issues, I was very sad to see and realise how much more work we have to do in 2013. Disabled people should not need or want for anything relating to their medical condition. Especially things that are so basic. To see how inaccessible many of our buildings, forms of transport and indeed some members of the public were; was very eye opening. I was also sad to receive comments from disabled people who have lost hope of ever having sufficient social care, equipment and support to live as they deserve to.

In pondering the reasons, I came up with a couple of thoughts. Please take these as ideas to consider, add your own touches and do air your own views too. Whatever you do, please just take some positive action and keep things progressing 🙂

We all know of the social model of disability. Arguably it needs updating, but it conveys the notion that people with a disability are only disabled by societal barriers. If the barriers; whether physical (eg. steps), attitudinal (eg. discrimination and disability hate crime), and procedural (eg, the 24 hour rail assistance booking process) are knocked down and support is given to overcome these barriers, then people will no longer be disabled. Please also let it be noted that if someone has chronic fatigue or chronic pain, the barriers argument is less just. If everyone understands disability in this broad context, they will quite rightly want some actions to lend their support.

Having just completed the famous ‘end to end’ trip, I wanted to wrap my potential solutions into a catchy and similarly named slogan. I came up with ‘spend to mend’. Here is how different groups of people can ‘spend’ their time, and sometimes money, on ‘mending’ our inaccessible world:

General members of the public

Whilst the social model of disability has enabled some social change and the independent living movement, it has also put you in the blame category. This is understandably confusing, unfair and a little harsh. After all, you did not decide to build steps, view disabled people as Bond villains or create disabling daily processes, all because of a conscious hatred for disabled people. This is ridiculous to even comprehend. However it is also fair to say that ignorance does not justify, and just like with other ‘isms’ (sexism, racism, etc) and global warming; we do need to wake up to social issues and be a part of the change together. If you comprehend these unfair barriers, understand you are not personally blamed, but do want to help remove them please help mend things by:

– Spending some time thinking about inaccessible public buildings and transport infrastructure in your local area.
– Spend a little time by visiting 3 of these places and asking the manager if there is alternative access and adjustments for disabled people. Should they say no, please let us know why at DH.
– Spend an hour to write to your local MP and explain that you believe in; the sufficient funding of social care (enabling thousands of people to choose for themselves when to sleep, eat, wash and live), supporting the funding of assistive equipment/technologies, and in educating society on removing barriers to disabled people.

Local and multinational businesses

You guys have identified a need in a market place, created a solution via a product or service, and sold it for a profitable price. Making changes for disabled people is not your priority. Of course, many businesses are socially minded and do a lot of good projects for society. The issue for making adjustments really comes down to cost. Many business owners complain about the Equalities Act 2010 (the newest law to include the Disability Discrimination Act) saying they had spent money on ramps, lifts, hearing loops and so forth, but nobody has ever used them. Therefore, if you want to understand why it is not bad for your profits and make changes, please help mend things by:

– Spending time to digest the fact that with 10 million disabled people in the UK alone, that many disabled people are already, and others could become, your customers. Plus with an estimated annual spending power of £80 billion, disabled people do have money to spend.
– Spend a little more time thinking on how a £50 ramp could unlock even one new customer (plus their friends/family) and pay for itself very quickly.
– Spending some of your budget on making your business more accessible. There is a lot of support on this subject matter if you look.
– Spending a little more of your budget on marketing how accessible you are, just the way you would celebrate USPs (Unique Selling Points) with your other customers.
– Spend some time counting the increased profit you made from this great social investment.
– Spending a bit of time and money doing charitable things, just because it is nice to be good without reward every now and then.

Disabled people

I think I have already outlined the many problems we face. One of the most surprising things for me, however, was being shot down by other disabled people for trying to raise awareness. I realised some of it was fair (around my not mentioning the different types of impairments and just the difference in people), and so I changed my views as a result. Some of it was unfair, born out of anger and frustration at being oppressed, and venting this at someone who would listen. Whilst we do face government cuts, silly processes, strange views about us and cannot access a lot of rightful places; by lashing out at each other does not help. In my personal opinion I think we have as much responsibility to mend things as non-disabled people. A start would be to:

– Spend some time on our own personal goals, personal limitations, external barriers, and attempt at working towards these dreams (this is mainly aimed at younger disabled people).
– Spending time to understand the things in our way and turn them into bitesize issues.
– Spending time solving them eg. writing to MPs, meeting social workers, obtaining helpful equipment/technology, fundraising, fighting for social care funding and ultimately never compromising our health or happiness due to our conditions.
– When possible spend time and money on bettering ourselves too (education, job progression, appearance, and fun times).
– Ultimately the best thing we can spend is the energy to be proud of ourselves, to grow as humans, to dream big, to never give up and to educate others patiently of our disadvantage – all to close the gap of inequality we find ourselves in.

Government

You are the oldest entity in the world to throw blame at. I think we haven’t always given government enough praise for the good things they do. If there was no government I would not find myself in an electric wheelchair, driving a heavily adapted car, with full time PAs and receiving Disability Living Allowance. Before the angry mob start having a pop, there is clearly a lot more I want government to do. It does often come down to money, but in a shorter term way than you might think Mr.Cameron. Firstly you do have the money to make these changes, it is just some of your priorities need tweaking. Plus, most of your spend would be an investment, as outlined below. Here are some ways you can mend this social problem too:

– Spend a bit more time acknowledging the number of disabled people needing support, the number who do not have enough support and the detrimental effect this has on real people.
– Spend money on making public buildings and transport infrastructure accessible.
– Spend more money on disabled and older people’s social care requirements (and in turn making this profession more valued and it’s amazing workers better paid).
– Spend money on assistive equipment and technology grants.
– Spend time seeing how you then will save costs from unhealthy/unhappy people, see increased tax revenue from employment of disabled people and their PAs, see the increased tax revenue from the higher levels of consumer expenditure, and see the economy flourish by unlocking amazing people’s potential.
– Finally, if someone cannot work due to their condition, spend time and money supporting them to be the best they can be no matter what.

I think you’ll agree the trip from Lands End to John o Groats sparked a lot of feelings and thoughts inside me. The above is a very simple laying out of solutions to a lot of very complex problems, for everyone mentioned. My hope is that this gives people a different perspective on disability. As Martin said to me on the trip, the key to progress is empathy. If we all understand each others situations; we can aim to satisfy our own needs, their needs and sometimes compromise in the middle. All of this while the roller coaster of life rides on.

Challenge your Britain’s Personal Best on www.whatsyours.org

Keep up with the latest disability adventures on www.disabilityhorizons.com

Please donate to our chosen charities on www.justgiving.com/user/45406731

See more photos on www.flickr.com/photos/martyn_sibley/sets/72157635430985579

Martyn Sibley

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