Do we need a general disability focussed thread? One which can gather experiences , initiatives and ideas ? I have listened to BBC media show podcast from last year on disability related to broadcasting /film which is a good listen. Link below https://open.spotify.com/episode/4C...i=5Agm_Ck0SdGihDotbHzjaw&utm_source=copy-link The MacTaggart lecture by Jack Thorne link below https://graeae.org/resource/jack-thorne-mactaggart-lecture-2021/ What it does highlight is the fear of disability and perhaps the general " Blame" culture we have in UK which tends to a policy to ignore issues . That barriers and lack of representation are such big issues may not be surprising to us , but how can we address this to derive a " both and" narrative, rather than an " us and them". Here from design experience disability is rarely designed in from concept in UK , and yet addressing issues makes life easier for all ( parents with buggies and those with elderly relatives appreciate wider paths , ramps, corridors and WC cubicles, additional seating helps those whose energy is sapped, subtitles for those who find focusing on speech difficult as well as those who are deaf... Other countries do things differently, and perhaps there is better provision and acceptance ? For example a friend whose daughter struggled hugely with dyslexia and who missed a year of school after glandular fever excells in photography and got a job in Berlin. On the induction she was asked which software package she used for dyslexia so that her pc could be set up for her first full day. Having had to fight tooth and nail for any accommodations this blew her away From a visit to Scandinavia a few years ago. ( pre ME) the wide provision of seats in landscaping and generally better access to and within buildings stood out. It seemed inclusive and not merely " additive" . I could of course be wrong . Friends don't comprehend what ablism is and how wrong some standard type responses are How do we positively change this. Discuss and provide some inspiration.... ?
It'd be a start if 'they' didn't just destroy any 'accommodations' that aren't in line with 'their' ableist view of the world. When I moved to this area 20 years ago benches abounded on all the main roads, useful for those who need (or desire) to sit down when out. Several years ago they upgraded/replaced a lot of these benches, as they were getting a bit tatty, having been in place since the year dot, with only the odd repair. Almost exactly a year later they ripped up/removed these basically new benches - so a walk to my local supermarket, or into town, now has zero benches, down from 11 (over a mile) in one direction and 8 in the other (again over about a mile). Basically meaning that I can't rest when out, so can't go out, walking, to the shop or town. In another area of the country benches abound, and I can walk much further, because I can rest, for as long as needed, when out. So, not ripping out things that help, simply coz benches don't fit in with their idea of their target resident, would be a good first step. ETA - public WC's - now almost all gone - there is now only 1 (down from 4) in the town center, which is shut a lot of the time - important if you're diabetic, and slow moving, don't drive, and a mile away from home. Bus shelters - don't seem to exist any more, so no actual seating (just a perch which is no use), no shelter from the elements, and quite a lot of bus stops no longer exist, or have moved - one of my local stops (the one I need to use to get into town) is about 75m further away from my home than it was when I moved in, and coz the road was widened (i.e. the needed space was taken from the pavements on each side, for a bus lane lol) there was no longer any room for anything but a pole on a narrow pavement. This sort of unthinking approach to how people may need to use, and why, such basic services, is 'unhelpful', and annoying. Town might have slightly better wheelchair access (it doesn't - although it might look like it to someone who doesn't use one) than 20 years ago, but if people can't get there.... Might explain why the town center is dying, even the charity shops that replaced a lot of more normal shops, are mostly shut now. My point is that in basic things, that have existed for donkeys years, we are going backwards, not forwards towards environments/services suitable for those of us who aren't single BMW drivers in their 30's/40's with significant disposable income. Even the Victorians had a better idea of the sort of facilities that needed to be provided.
I have been thinking about these issues for a future Blog. I have realised how much Abelism I carry even though I myself am Disabled and need multiple disability aids and assistance from a carer. I have grown up in a World that emphasised Productivity and Hard Work overcoming any obstacle. Imo - disabled identity in the wider community consists of only two options: inspire able- bodied people, or be a sad failure in need of a telethon. Hx
Possibly not a good fit here but this is an example I've seen: more senior healthy people placing the usual demands and expectations on pwME just because they are younger. Dismissing the disease because the pwME is younger and can supposedly "cater to" the more senior individual. An example of the universal understanding, greater age may cause inability, but those of younger age should be perfectly capable, even if they have the debilitating disease ME. Bottom line here of course is pwME are not believed they are disabled.
Perhaps a tangent in this thread, but I suspect a problem with ME in relation to ‘disability’ is that we collectively have not decided if we are ill or disabled. Central features of ME, such as PEM further cloud this issue. Whether I am projecting my own journey onto other people, but I had for many years focused on treatment, on getting better, rather than looking for acceptance and accommodation for my disability even though I had previously, though employed in health, worked supporting social services accommodating people with disability and taught on disability awareness.
I relate. It seems so fixable (and there should have been treatments that could help by now - if only obvious already licensed things that vary by type), and at least easily accommodatable to ensure people don't become more disabled. Like letting people park near a building rather than fighting for spaces half a mile from the office and allowing shorter working days by half an hour - particularly if the activity involved that week will be busy. Particularly when you output more in a week, perhaps double, than some of your colleagues who the turning up at 9am seems less hard. But any 'weakness' as they call it is made into a laugh for others, even if they give less - weird isn't it in the UK they'd rather have someone producing half as much that is half as good again as long as they do a run in their lunch hour. It's very indoctrinated. You have to be trying and churned out the other end by the system to realise how many like to buy into i because of the competitive nature of it all.
@Peter Trewhitt I really relate to what you say: I spent years pursuing a 'cure' ...and now, after literally decades, I am at a point of wanting to accept myself, as I am, and work with my situation as it is.
@Peter Trewhitt @hellytheelephant I spent decades and lots of money trying to recover, or improve substantially. Always chasing the dream of returned vigour, and health. Nope, never happened. This shouldn't repeatedly happen! Quacks and charlatans are just lurking like spiders in their webs waiting for desperate people to prey on.
I think that in general, Western culture is very focused on performance, capitalism obliges. Which roughly means, you are efficient = you are useful and conversely, less or not efficient = useless. That was never my personal values. Before ME, I worked with various people to help them, and I can tell you that there are all kinds of handicaps, visible and less visible. For me, everyone has something to give, can enrich us. That said, as pwme, I realize that I value my autonomy extremely (all by myself !) and that there is a bad flip side to that; it is sometimes difficult for me to accept help. That means that even if, for exemple, I can get a parking sticker for a closer parking spot, I don't ask for it. Or, if a neighbor wants to help me (eg. carry my grocery bags), I kindly decline, thanking him, even if it is obvious that it is a difficult exercise for me ! What inconsistency, isn't it, me who liked (likes) helping others ! Once, one of my sister wanted to offer me a wonderful walk in a place that I loved, in a wheelchair, I declined the latter when it would have been necessary for me (and I paid the big price afterwards, PEM). Lack of humility, pride on my part... but not only that. Before ME, I was a great walker, hiker in the forest or in the mountains. It is as if it's still part of my deep identity, despite the obvious gap with my current limited abilities. However, I realize that in clinging to my "autonomy", it is certainly my way of resisting the disease, but also I believe a certain difficulty in accepting to see myself as handicapped. But I know that a day will come for me, and not so far away, when I will absolutely need equipment adapted for people with disabilities. It's a bit like my professional briefcase which remains frozen in time since I haven't yet resolved to empty it... After almost 13 years of ME, it testifies to this mourning-hope which is always present in me. Although I understood early that there was no real cure yet, I realize that I still have hope. Nevertheless, I would say, after all the mirages conveyed by the too many not so credible researches, a lucid hope .
