Disability as a community

Since my quickfire video on last weeks travels I had a great meeting at Spurs, my new PA Gabi started Thursday and I finished the working week. Friday night I was energised enough to manage a few drinks and a later night. Always nice to finish the working week with friends and good times. Had 2 massive lie ins over the weekend, saw mum and Claire Saturday and enjoyed a nice night in that evening with tv and curry. So into Sunday I met Vik, Srin, their PA’s and later on my other PA Beata (B). To clarify B and her sister Gabi are now both my PA’s. David does weekdays and they do alternate weekends. B just breezed through socially.

The afternoon was spent with Srin and the Vikster on the Southbank. The Thames festival was in full swing, the sun was out and we managed to chill out while catching up. It came to me how interesting the dynamics of being disabled is, the friends you have (disabled and not) as well as the bigger picture of the disabled community. For me personally I did not have so many disabled friends until I was around 11. I believe I have mentioned already I benefited from seeing I was not the only person in the world the way I was. Then at uni I lived with other disabled people and met one of my best mates in the world – Grimsby Rich. We get on in so many ways and part of it undoubtedly is having an empathy some of my other mates just could not. Rich and I are also great mates without our disabilities, as we just click.

Kicking it with Srin and Vik opened up some thoughts around disability, how we approach this and some of our personality traits. Us 3 all have SMA and so in theory are very similar. Sure, physically there are similarities but we have different personalities, jobs, sense of humour and even views on our SMA. The following part of the blog is not of our conversation but some thoughts and observations I have had since. Really our chat was quite brief and mainly how we approach care. We then moved onto eating our Nandos, but it planted the seed of thought that has grown into this blog.

Its actually obvious to say disabled people will have different occupations, interests, personalities etc. Another point that is obvious (but fair to mention alongside this) is how different impairments make disability a very varied thing. Someone in a wheelchair to being deaf, dyslexic, having ME and so forth will have massive differences in the effects to them as a person. The point of where all this grabbed my thoughts is around solutions to disability or indeed government decisions around social care and benefits. Clearly generalisations have to be made, but when people have ‘normal’ but varied traits (loud, quiet, shy, outgoing, thoughtful, practical, etc)  – a one size fits all approach is hard. Support for a wheelchair user being a builder is a different matter to a dyslexic teacher, yet both should be possible. Furthermore someone who is blind needs a totally different care package and financial support to someone with ME.

Clearly my area of experience and ‘strength’ is from a wheelchair users perspective. Having ‘generalised’ in some of my blogs I was right to learn of other impairments and know my blogging limitations on disability. However I do feel sometimes the disabled community can accidentally knock the points a person makes on a specific impairment, to enhance the profile of another part of the community. For me, to enable the government and other key decision makers to make the right solutions, the disabled community has to find its own common ground.

In acknowledging different impairments, acknowledging different perspectives, observations, viewpoints, opinions, approaches and other human traits would be a good start. Then to find the overarching objectives and similarities is the next step. There would be no need for shouting to represent a particular impairment, no need to push the agenda of a shy disabled person over an extravert, or indeed advocating for a ‘poorer’ fraction of the community over a ‘wealthier’ part (to generalise). This answer would allow for all impairments, all personalities, incomes and types of lifestyles to live fully. Only then will the government be hearing one loud, inescapable lobbying power. Until then I worry the smaller voices representing different parts of a massively disparate group of people will counter act itself rather than achieve the overall point – the right policies for each and every disabled individual!

I do not know of this overarching solution and stress these are just my personal thoughts over the past months. I would love to hear if you as a reader think this approach is flawed, could be tweaked more or you agree with its sentiments. The gold at the end of the rainbow is not coming tomorrow, but I believe to consider the disabled community in this way enables a more holistic way of reaching it sooner.

Thats enough heavy stuff for Monday night! Off to watch the Inbetweeners now 🙂