Category Archives: Activism

the intersection

22 Monday Jul 2019

Posted by in Activism, Blog, Disability, health, Mental Health, Uncategorized

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I’ve spent the last few years insisting that my worsening physical health isn’t impacting on my mental health; that maybe occasionally my brain will mistake not leaving the house for days at a time for depression and slump accordingly; that I don’t grieve for the abilities I’ve lost. I find denial a powerful coping mechanism, but one that only lasts so long.

It’s not that I never get a bit sad about losing my physical abilities. The other night I dreamt I had learned how to click my heels in midair (apparently it was to do with having the right – possibly magic – shoes), and woke up feeling rather wistful, despite not having been to a dance lesson in years . Social media constantly throws up reminders for me of what I used to be able to do – climb a mountain, walk a marathon, stay out all night, walk to the end of the road unaided… I tend to view these prior accomplishments without sorrow; I’m just pleased that I did them while I was still able to. Of course, if I’d known that everything would go so, so wrong before I hit 30, then I like to think I would have done a lot more. For five years in my adolescence I lived on a lake, and can count the number of times I took the canoe out on my fingers. As much as I wish I could go back in time and shake up my sulky 13 year old self into going outside on a bright spring day, instead of spending the day lounging on the sofa with a book, I know that it won’t change the now. At least I have done things, I think. At least I’ve been to places that I couldn’t manage now. I just wish I’d done a little bit more.

But it’s not the physical loss I struggle with. Whether as a result of fatigue, brain fog, lack of ADHD meds or a combination of the three, my ability to sit down and write something longer and more convoluted than a tweet has all but disappeared over the last year. I feel like I’ve hardly done anything in the realm of activism or awareness so far this year – which is slightly unfair as I did write one article and collaborate on another, but it’s hardly the height of productivity. Almost six months characterised by notebook pages and blog drafts with ideas, starts, first paragraphs – and no energy or drive to continue with them.

I have always put more value in my intellectual abilities than my physical ones. As a clumsy, easily-injured child it made sense. Not that I was particularly good at school either. My parents pushed me to work hard (I didn’t) and get good grades (ditto) and I’d throw myself into things that I liked and do the bare minimum with those I didn’t. This is what’s so distressing – I can’t throw myself into my passions as readily as I used to be able to. Thinking through fog I can get a few sentences down, then when I come back to it a few days later or when I’m next able to, the flow is gone. Writing my way through chronic illness and disability has been an invaluable outlet in the last 5 years, and has led to some amazing opportunities, and without it I feel utterly useless, my power centre taken away, my saving grace gone. My self worth is so tied up in my productivity, even my adjusted-for-illness productivity that without having something to be working on, no matter how small, I feel like I have no purpose.

The fog has lifted slightly today, so I’m taking the opportunity to get this down before I lose my train of thought or get too tired. I need to write more, I know this, and write more without worrying about form, readability, coherence. The important thing is that I do write my experiences down, not how well written they are. It’s another mental block to get past.

 

Disabled facilities are not storage spaces.

14 Saturday Apr 2018

Posted by in access, Activism, Disability

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“Disabled facilities are not storage spaces.”

You’d think the above statement would be obvious. After all, what use is a cubicle or toilet if it can’t be used for its intended purpose? Unfortunately, the answer is often found inside – where these facilities created to enable wheelchair users to try on clothes or use public conveniences are misappropriated as store cupboards.

I cannot tell you the entire range of items that can be found in accessible loos, but to give a brief picture from my own experience: mop buckets and cleaning equipment, excesses of nappy bins, unfolded baby changers, staff members’ bicycles, zimmer frames and wheelchairs belonging to other patrons, and even folded wheelchairs belonging to the venue itself. For a wheelchair user, having the space to enter and safely transfer to the toilet, let alone turn around to exit again without contorting oneself, is paramount. Having the facility stuffed with unnecessary objects and obstacles often prevents wheelchair users from being able to transfer and turn around safely, as well as from accessing the emergency pull cord (which has its own ongoing issues with being cut or tied up). In the worst case scenario, a wheelchair user may find themselves without a toilet they can use while out of the house. We shouldn’t have to pre-check that the toilets are not being used to store things before we choose where to go for supper, on top of checking all the other accessible points that are needed but sadly lacking in so many public places.

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THREE nappy bins (count ’em!) in a shop’s accessible loo, preventing the ability to turn around.

And then there are fitting rooms. What prompted this post was a visit to Topshop the other day, my local branch in the Palace Exchange, Enfield Town. The shopping centre itself is pretty good for access – it’s all on one level, all shops are level access, most shops have lifts if they have more than one floor, and there is an accessible loo that can be accessed by Radar key. I don’t normally try on clothes – it’s less exhausting for me to buy something then try it on at home and return it the next week if it doesn’t fit – but I was having a good day and wasn’t sure which size of the shirt I liked would fit me. I was pleasantly surprised that they’d thought to include a wheelchair accessible fitting room, but less pleasantly surprised by what it was being used for:

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Even the models in their adverts would struggle to squeeze into here.

The staff member monitoring the fitting rooms was very apologetic, and helped me cram my chair into a normal cubicle and pull the curtain around its sticking-out arse (yes my chair has booty). Although I managed to try on the clothes I wanted to in a very small space, I was left feeling that “sorry we’re using the accessible cubicle to store sale rails” wasn’t really good enough. What if someone came in who really needed that larger space? Someone using a larger wheelchair, or who needed someone else to assist them in trying on clothes? Not to mention access to the emergency pull cord….again.

I’ve tweeted to Topshop and haven’t had a reply yet. I’ll keep trying. This brings me onto how to address the misuses and abuses of facilities meant for disabled customers:

COMPLAIN. Complain as loudly and as publicly as you are comfortable with, in person or online. Tell your friends, get the message shared. It is shameful to misuse an accessible space like this, and the abuses of them will only stop when it becomes seen as an unacceptable thing to do. This won’t happen without public pressure from customers both disabled and non-disabled. So, next time you’re in a clothes shop with an accessible fitting room, have a look and see what it’s being used for.

In the meantime, I await a response, any response, from Topshop….

Ability Bow – a gym for disabled people in London, hit by Tory cuts.

12 Sunday Nov 2017

Posted by in Activism, Disability, Government Cuts

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The Tories are taking away from disabled people with one hand, and outright stealing with the other. I recently received a message from the user of one depleted service, asking me to spread the word. I recognised it as a gym that I had once been recommended to use myself when I was unable to do my physiotherapy exercises on my own, so I was shocked to hear that many of its services, including the ones I had been recommended, were no longer available.

Ability Bow is located in the heart of East London, and was set up in a disused church after a community campaign in 1998. It accepts both disabled and non-disabled members, with programmes tailored to each person’s ability and goals. Disabled and elderly people are frequently referred from their GP, so that they can benefit from what Ability Bow offers. It’s no surprise that the gym is described as “busy” with the amount it offers, including specialist sessions for stroke patients, people with MS, people with learning disabilities and, still on the website as “starting soon”, a programme for D/deaf and hard of hearing members. From 2006-2016, over £2.3 million was raised so that 3650 disabled members could exercise safely and with supervision  – the gym is wheelchair accessible, with accessible changing rooms, equipment, showers and even a sauna! 

Most of the people we work with have had a life-changing event such as a stroke or spinal injury or the diagnosis of a long-term condition like MS or Parkinson’s Disease. We accept referrals from GPs, physiotherapists and other Health or Social Care professionals and we have no exclusion criteria – we do not turn anyone away no matter how complex their disability making Ability Bow the only service of its kind in London. – from the Ability Bow website

The Ability Bow gym is an active, and beneficial part of both the East London and disability communities. However, in October 2016, due to a lack of adequate government funding, Ability Bow was made to cut half their professional staff and subsequently many of their services. Currently the Ability Bow gym is only open for those who can exercise without close supervision (after their initial supervised introductory sessions), which leaves 60% of their membership, who have been referred from their doctors and need more support or 1:1 sessions, without any gym services at all (the nearest similar service is in Birmingham). This is a huge blow to the regular users, who now have no support to exercise, and also a self-defeating move from the government – the long-term rehabilitation offered by the gym reduced hospital admissions, physiotherapy needed, and amount of medication and care needed in several disabled gym members surveyed. The money saved by cutting the gym services will be added onto the additional cost for the NHS and social services. It’s not just the exercise either – the members no longer catered for are missing out on socialisation, interaction, familiarity; things many severely disabled people lack due to a rotation of unfamiliar carers and lack of support.

The testimonies speak for themselves:

“My daughter uses the gym regularly. She is long term disabled. She no longer gets regular physio. The reason is funding cut. The excuse is that she has the gym to keep her agile. Now the gym is being affected by cuts! What a disgrace. The top priority for funding in the city should be important projects like this!” – Akiva

“My wife is a user of Ability Bow. It is a rehabilitation centre as welll as a gym. My wife was always falling due to her poor balance and mobility limitations. Use of the the specialist/adapted equipment at Ability Bow and the support from staff has helped her build strength and develop confidence which in turn has reduced her falls and visits to A&E. As her carer, Ability Bow helps me to help her, Please save Ability Bow” – Joseph

“I have worked here for the last 7 years and it’s one of only 2 or 3 gyms in the country that caters for people with serious health conditions with specialised equipment.I have loved working at this gym and seeing the life changing impact it has had for clients.” – Andrew

“…my wonderful sister attends the gym and has benefited immensely. The staff and centre do fantastic work helping some of the most vulnerable and often forgotten members of the community. The gym provides a much needed and invaluable service.” – Mary

You can find more testimonies, and information on how to help campaign to restore the gym’s services at the Ability Bow website or on the campaign’s Facebook page. 

There is a 38 Degrees petition here, and enquiries on Twitter can be directed to @DJ_Paperwork.