Tag Archives: disability

The Good Samaritan

16 Tuesday Mar 2021

Posted by in Blog, Disability

≈ 4 Comments

Tags

, , , ,

I wrote this a year ago, the night it happened. I wanted to get the details down while they were fresh in my memory, but as it turns out this didn’t matter. A police officer came to my home a few days later, and told me that because the incident had happened off the bus they couldn’t use the bus CCTV to try and identify the man because it would “violate his right to privacy”. The (male) police officer also suggested that the man might have honestly “just been trying to help”. Because of lockdown and my health risks, I’ve not been on a bus since and that’s been the best help in dealing with this. I’ve decided to post it now, though, because of the outpouring of stories women have been sharing since Sarah Everard was killed and because disabled women are at risk too – often under the guise of “assistance” like this. 

Two men are facing me, sitting in seats separated by the aisle; it was clear they’d been having a conversation, thrown together by late night commute. Talk quickly turned to the wheelchair ramp, which didn’t want to go back in. We sat while the alarm beeped and the recalcitrant ramp moved a few centimetres at a time towards its goal, sharing weary head-shakes, eye rolls, “oh TFL” sardonic grins, until eventually the bus was able to move off. I learned on the short journey that the man on my right was heading somewhere unfortunately far off the night bus route and not looking forward to the 40 minute walk. The man on my left asked me some questions, none about my disability, which I answered coolly but politely (my age, why I was out so late, if I needed help). It’s ingrained in me not to ignore questions, even from strangers. Say something or it’s rude, but include as little information as possible if you don’t feel like a conversation. Politeness will get you everywhere, including into trouble.

At my stop the ramp deployed properly but then, of course, refused to return to position. The driver got out of the bus, and excused me from trying to assist. Wishing him the best of luck, I got around the corner of my road before stopping for a minute to answer a message on my phone with my dominant hand, the one I use to control my wheelchair. I can hear someone coming up behind me, and move over a bit to let them pass with more room.

“Hello!”
To my surprise the man from the left hand side of the bus is walking up to me.
“I just wondered, did you need any help?”
I didn’t remember him getting off the bus at my stop, but maybe since the ramp was taking its sweet time going back in, he had time to come and ask – many non-disabled people offer me assistance like this in the average week, both underestimating the power of my electric wheelchair and the extent of TFL’s accessibility infrastructure (if you’ve never needed to use a wheelchair ramp on the bus, for example, you may presume the driver is about to leave without letting a wheelchair user off, but the doors need to close for the ramp to be deployed).
I said no thank you to his offer of help, and this where most people stop.
“But you must need help!”
Again, no thank you, I explained that I manage this journey into the city and back multiple times a week (slight embellishment for emphasis on my independence) and don’t need help getting into my own home. He changed tack:
“What is your name?”
I couldn’t pretend to be distracted this time. My mind sticks on Elly Higginbottom. “Elizabeth”.
“Elizabeth… Elizabeth, oh Elizabeth…”
the wavering red flag I’ve felt since he appeared on my road suddenly springs upright
“I think you should probably go back to the bus” (although I was vaguely aware of having heard it drive off a moment before) “you don’t want to miss it”
“Let me help you, Elizabeth”
He speaks gently, but as if he’s already decided on the course of action and he’s just asking first because it’s a social norm.
“No it’s okay, I’ve been travelling on my own since I was a teenager, I don’t need help”
“No Elizabeth, where do you live? Do you live here?”
Deflect, deflect, deflect (and lie) “About five minutes away, look it’s nearly 1am I just want to go home and go to bed it’s really late, so…”
“Can I come with you, walk with you?”
At this point, I am acutely aware that the late hour means that most of the people on my residential road are in bed. Footfall is minimal, as are passing cars. My wheelchair has lost some battery over the course of the evening and is now running at a medium-fast walking pace at best. The priority is not to let him know where I live, which means cutting contact with him there at the end of the road.
Direct, direct, direct “No, sorry. I just want to go home, have a cup of tea and go to bed”
This seems to encourage him in a new direction, unfortunately.
“Can I come home with you and have a cup of tea?
“No, sorry.”
“I can stand outside even, not in the house, just a cup of tea”
“No” – no more “sorry”, because the red flag is getting ominously brighter
“Coffee”
“No, I just want to go home and go to bed”
“Can I not come for one cup of tea?”
“No, sorry [argh] I’m not going to take a stranger home with me in the middle of the night” (slight lie, ask my second year housemates)
“But I won’t be a stranger soon, we are at the beginning of something”
fifty fucking red flags are waving in my face
Now desperate, and not sure when I went from feeling hassled to actively scared, I try to override my British-Canadian double whammy of natural politeness and the wobble in my voice.
“Leave me alone please. I don’t want you to come home with me and I don’t want to talk to you any more.” Said as forcefully as possible, being very aware to put on an apologetic smile at the end to dampen the rejection. Everything in me is screaming “don’t make him angry” so the urge to just keep him placated is overwhelming, but also things have been slowly escalating in the last three minutes and I am very worried about where they might end up. I start to silently pray for someone to come walking past.
“You don’t need to speak aggressively to me Elizabeth” I think I do
Since he mentioned coming to my home I’ve been thinking of what is open at this hour nearby on a weeknight. Nothing on the parade of shops to the left, the corner shop closed two hours ago. The pub on the right? No one’s in the beer garden having a smoke, so I can presume the doors are locked. I’d have to roll 15 minutes into town to find anywhere open, and he already knows that isn’t my way home.
In utter desperation I use my last card.
“If you don’t leave me alone, I’m going to have to call the police”
“You don’t have to do that, Elizabeth, I am not-“

I see a man on the other side of the road, strolling briskly in the direction of my flat. I immediately cross the road (thank heavens I stopped on a drop kerb) and go after him, occasionally shouting to try and get his attention, but he is wearing headphones and doesn’t hear either me or my high-pitched (and usually ineffective) wheelchair horn. I follow him for close to five minutes, passing my house on the other side, never getting closer than 2 metres away thanks to the reduced battery life, and too scared to turn around to see if there’s a figure in a red hoodie following me. I think about calling the police but don’t think their priority in North London at night is to come to the aid of someone who may or may not be being followed, and in any case the local station closed down years ago and it could take hours. By the time the man with the headphones crosses the road at a point where I can’t follow him, never knowing that I tried to get his attention, I’ve made a list in my head of anyone I know nearby who might be awake (but still probably isn’t). I can’t hear footfalls over the sound of my wheelchair, but I don’t want to stop so I take a convoluted route through the residential side streets, making sure that if he’s still following me I could still be feasibly “going home” (and realising that I am still considering his feelings although I can’t tell if it’s out of tact or fear of angering him). Eventually I stop and look back. Nothing. He hasn’t followed me. My only worry now is that if he was savvy enough he might have gone up and down my road looking for a wheelchair ramp. I call my upstairs neighbour, guiltily aware that I will most likely be waking him up, but after three attempts realise his phone must be on silent. Scanning mentally through the rest of my potential awake people list, I message the neighbour who lives near the end of the road where I had the encounter with the bus man. She is in bed, but says she’ll stand at the window and look out for anyone wearing a hoodie. I know this won’t help if he’s found my house in the meantime, but at least I don’t feel quite so alone. Forty minutes after getting off the bus, I come back onto my road from the opposite end to the bus stop, barrel up the ramp to my front door and put the chain on after it shuts. 

The 10 Year Challenge – dealing with change.

23 Wednesday Jan 2019

Posted by in Disability

≈ Leave a comment

Tags

, ,

For the last couple of weeks the 10 Year Challenge has been sweeping social media, and so far I’ve abstained. It’s not that I don’t like my face now, or my body; I’m happy with those changes. In 10 years I’ve gained a fair amount of weight but love my curves and softness. My hair is still usually short, although a bit thinner and with a lot of white hairs dispersed throughout. I’ve learnt how to use brow pencil. I’ve still not learnt how to pose without looking silly. My personal style is more defined (and still not grown up). But I’ve not been able to post any flashback pictures yet because this challenge holds more poignancy for me than I can summarise in a side-by-side comparison.

2009c

This is me in Utrecht in August 2009, on my last day of a month Interrailing on the continent. Four countries, countless cities, stations, hostels, new friends, and one 13kg backpack. Of course, Ehlers-Danlos Syndrome is present from birth, but it would be another few years before my symptoms worsened and became unbearable, and I sought diagnosis. At this point I just knew I was “tireder” than other people, and that my hips and shoulders could come out of place if I wasn’t careful. Pain kept me awake a few nights on this trip, and I had one day near the end when I fainted and had to stay in bed. But I managed four weeks of varying beds in hostels and stranger’s floors when couch-surfing. I walked miles every day. I carried that monster of a backpack. I got a concussion and cured it with gin. It is an experience that I have absolutely no regrets over, but that doesn’t make it any less bittersweet to look back on.

When this picture was taken I was about to start my second year of university. I didn’t know what I wanted to do with my degree yet. Teaching ESOL was high on my list, and I bought books about countries like Cambodia, Laos, Bhutan, in the idea of maybe going there after I finished university to teach for a bit. It didn’t happen. After graduation I moved back to London and stayed, and as my health got worse and worse my world became smaller and smaller. Part of this is due to the access issues facing all wheelchair users. When I went on that trip in 2009, I booked my flights, my Interrail ticket,  the first hostel and the last one – as well as one night in the bizarre Propellor Island hotel in Berlin. Everything else I played by ear, because I could be spontaneous, and it’s that spontaneity I miss so badly now. Even if I wasn’t too ill to attempt a month of travelling, access issues would come up constantly if I tried to repeat it. Getting to the city from the airport by the hostel’s free shuttle wouldn’t be possible. None of the hostels I stayed in were wheelchair accessible, nor the apartments of people from Couchsurfing or friends I’d made on the trip. The trains and stations weren’t all accessible (none at all in Poland) – and forget just hopping on a train without knowing the precise access details of the destination station and whether the local buses are accessible either. As for the giant backpack (his name is Hamish), I don’t know how that would work now! I’ve travelled quite a bit since becoming a wheelchair user – making up for the previous few years of being mostly stuck where I was – and research is everything. Lots and lots of research.  Spontaneity only happens within the confines of the “places I’ve been already and know to be reliably wheelchair accessible” list, and then only when I’m feeling well enough.

The person in the photograph thought they had everything ahead of them, could do literally anything with their life, and I still often find it hard to accept that so much has changed since then. This weekend I was having a small mope about this subject (which has become this blog post). “It’s so different to how I imagined my life at this point” I cried to my boyfriend. After pondering on this for a moment he replied with some words I need to remember when I feel sad about this: “Just because it’s different, it doesn’t mean it can’t be wonderful.”

 

Disabled facilities are not storage spaces.

14 Saturday Apr 2018

Posted by in access, Activism, Disability

≈ 3 Comments

Tags

, , , , ,

“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.

IMG_1720

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:

IMG_0101

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

≈ 2 Comments

Tags

, , , , ,

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. 

 

 

Where Are All The Accessible Properties?

31 Thursday Aug 2017

Posted by in Blog, Disability, Housing

≈ 3 Comments

Tags

, , , , , , ,

I came back from 10 days away to no emails from the council after our visit there a couple of weeks ago. The friend who is acting as my advocate sent them an email when I told him this, and got a quick reply that I should soon be able to look for private rented accommodation in the borough, then use their scheme to cover the deposit. Ignoring the fact that I should have been sent this information as soon as I had been approved (with J cc’d), the deposit is not what I am having problems with, as my dad has already offered to pay it (a small but arguably fair recompense for evicting me). The problem I am having is with finding suitable rented accommodation in the first place. Heck, it’s what I’ve been trying to do for the last several months! I was told first in June that I’d have to look for private rentals because the council itself did’t have any accessible properties on their books, but I only went through the council because I was having trouble finding any affordable accessible properties in the whole of London; limiting my search to one borough, even to properties that have agreed to house council tenants, seems doomed to fail. I’d optimistically hoped that if Enfield Council didn’t have any suitable properties then maybe they could refer me on to another council that did, or a housing association that the public can’t access independently.  Enfield do have a housing association that works with them, but I’m still waiting to see if I’ve been approved for referral. If I am, then I will have to see if they actually have any accessible properties either. If neither have any, then what?

So where are the wheelchair accessible properties? I’ve found some on general property rental sites during my 8-and-a- bit-month search. They’re generally accessible by coincidence rather than design, and in new blocks of flats that definitely don’t want people like me applying; the kind that have concierges, and pot plants in the hallways. It goes without saying that they are not affordable, even with housing benefit. I could cover the difference for one or two months, and then I’d be out of money and back to square one. It also goes without saying that most properties, accessible or not won’t accept housing benefit, or sometimes ANY:

IMG_2620

Disability Discrimination is alive and well in the UK in 2017.

I suspect the answer is that accessible properties are dying out. The local council used to own many, which got sold off along with much of their general housing stock. The new landlords take out the adaptations, and raise the rent. They can deny installations of equipment needed to help disabled people live independently, and they can evict tenants without good reason just to redecorate a bit then hike the rent up. I haven’t been able to find somewhere to live in almost nine months with a very flexible eviction date, so I don’t imagine I’d do very well with just a month’s notice.Of course, if you can afford to buy your own home and make the necessary adaptations to it, that’s another matter. However, like many disabled people in the UK, I live on disability benefits and am therefore not allowed to save up for a deposit, though I do enjoy imagining the look on a bank employee’s face should I present my financial profile and ask for a mortgage. It seems the wiser thing to do should have been to wait until I had a career, savings, and a mortgage before becoming disabled. Silly me.

Through all this, I am struggling to keep my mental health together. I’ve worked really hard since January’s housing related episode to keep a balance, but when I got the forwarded email yesterday evening, my mood plummeted and I’ve been treading a dangerous line ever since. I can’t seem to engage with the council or think about the process without sacrificing the progress I’ve made since January, and I’m not currently in therapy because the CMHT doesn’t have enough staff to run the group yet (it seems once they’ve decided on the best course of therapy for someone, this can’t be changed due to such trivial things as staff cuts). I’ve spoken to the social worker there before, but she said she didn’t deal with the council because they never picked up the phone, so that’s another line of support cut.

In trying to be proactive, I’m writing this. Angry blogging is my first line of defence. Delegating research to friends who offer help is another. Does the council have a duty of care to appropriately house me, or does their responsibility end at offering me the chance to bid on unadapted properties? How much difference can getting my (shiny new Labour) MP involved make? Or the media? That kind of research. What also helps is that, unusually, I have quite a lot on my plate right now at least writing-wise, but this does rely on keeping the clouds from gathering in my brain. Once I’m fogged with depression, productivity becomes impossible.

Onwards, somehow!

 

The General Election is this Thursday – let’s Crip The Vote!

06 Tuesday Jun 2017

Posted by in Disability, Politics

≈ Leave a comment

Tags

, ,

Crip The Vote emerged as a digital movement in the first half of 2016 in the United States, and was an active voice leading up to the Presidential election that November. As noted by its founders, disabled people are America’s (and the world’s) largest minority group, but a group whose voice often goes unheard in politics, even on topics which directly affect them such as healthcare, and social services. From its origin as a hashtag on Twitter, it became a movement that spread across the internet and invited disabled voters to participate in grassroots discourse about how they could become more involved in politics and the electoral process. As the disabled community online crosses continental borders, it was only natural that once the General Election was announced on the 18th of April, #CripTheVoteUK soon followed.

It seems incredulous that a movement is necessary to point out where access improvements are needed, but that is part of what Crip The Vote does. This ranges from ensuring polling stations have full disabled access, to pressuring political parties to release their manifestos in all possible formats including BSL and SSE (Signed Supported English), large print, braille, and simplified English. The latter is thankfully becoming more common since Mencap’s campaign to include people with learning disabilities in politics. Some parties fare better than others at inclusion- the Conservative Party released their BSL manifesto too late for postal voters to see it this year.

Inevitably, a large part of the movement is based on drawing attention to parties’ policies which affect the disabled community, and urging people to vote accordingly. For that reason,  many of those participating in #CripTheVoteUK are committed to ousting the Tories who have caused unrelenting misery for disabled people in the UK since 2010 – be it from increasingly unfair ATOS or Maximus assessments, cuts to Legal Aid, NHS service cuts, cuts to disability benefits – disabled people have borne the brunt of the cuts made to keep our economy afloat, while the richest pay minimal tax and hide their money in offshore accounts. (By contrast, Jeremy Corbyn has repeatedly voted against benefit cuts, against the bedroom tax, and for increasing benefits in line with inflation – oh, and making millionaires pay their taxes!) Disabled people in the UK are literally dying from starvation, illnesses worsened by stress and poverty, even suicide after benefit errors, going without care hours when reclassified as being in less need, even being denied the wheelchairs that would help them engage in the community by the NHS who have been told to save money by tightening the eligibility criteria. We are being shat on from all sides, and we are sick of it. That is why Crip The Vote is so important; it gives us some agency back.

It’s hard to write a vaguely objective piece when it directly affects you so much, which is why somewhere in the last paragraph I dropped the formality. I’m not a journalist, I’m a blogger at most, but one who hopes that what they write might one day make a difference. So I’m starting here:
Abled Britons, non-disabled citizens, please read this warning. A vote for the Tories is a gamble, a bet that during a Tory government neither you nor anyone in your close family will become sick or disabled. As long as you remain in a stable job with a good wage, as long as your house remains standing, they have your interests at heart. Once the bricks start crumbling, once you get weaker, once you need to leave that good job to look after a spouse or child, they will not help you. They will punish you for a situation that was not your fault, make you feel as if just surviving another day is political dissent. At times the only thing that has kept me alive is knowing that I do not want to become another statistic, have my death called a “tragedy” by politicians who voted for me to have a harder life. I know my own experience is mirrored by many of my disabled comrades, and I also know it doesn’t have to be like this. This is why we are Cripping The Vote.

(If you want to vote tactically in your constituency to give your local Tory candidate less of a chance, you can check who you should be voting for on this handy website.)

 

My wheelchair is not a prison!

12 Sunday Mar 2017

Posted by in Blog, Disability

≈ 7 Comments

Tags

, , , , , ,

Since becoming visibly disabled in 2013, after several years in the invisible camp, I have been anxious about seeing people I used to know, and meeting new people. Not just the inevitable “what happened?” (answer: “technically nothing, I was born with this”), but the misguided sympathy I now get for being a wheelchair user. Non-disabled people tend to see the wheelchair as The Worst Thing That Could Ever Happen to someone – look at the terminology used: wheelchair-bound; stuck in a chair; confined to a wheelchair…. but they don’t think of the alternative. Before I had my electric wheelchair, I would leave the house once or twice a week, as it caused me that much pain to walk and the knock on effects weren’t worth it. Now, as long as I’m not in a bad fatigue phase, and can get what passes for “dressed” enough, I can go out multiple days in a row with only minor consequences.  Without their wheelchairs, tens of thousands of people in this country would have no access to education, work, or a life outside of their homes.
The futon is my prison, and the wheelchair is my freedom and my best friend.
I will admit to getting a bit (extra) depressed from time to time because I miss being able to do the things I used to love – dancing, climbing, scrambling, hiking (basically anything involving going up mountains), kayaking – but what people often fail to understand is that even if I didn’t need my wheelchair, or the crutches I sometimes use, I wouldn’t be able to do these things anymore anyway. The wheelchair is not the symptom of my condition or my limitations, it is the thing that helps me continue to do what I have left. So don’t aim your sympathy at my wheelchair -maybe channel it into anger at the lack of wheelchair access I and other disabled people face instead!

And breathe…(for a minute)

09 Monday Jan 2017

Posted by in Blog, DWP, Housing

≈ 4 Comments

Tags

, , , , , ,

My PIP assessment results arrived over the weekend. I’ve been awarded higher rate care component (as before), but also higher rate mobility. This is the part that enables disabled people to lease adapted cars, if they wish. Right now neither C nor I can drive so I won’t be using it for that, but the extra money will definitely be helpful right now. It came as a massive surprise – I was expecting to get nothing for mobility again because I can walk a small amount with crutches. Is this the one time they took “safely, repeatedly, reliably” into account?
Also, amazingly, I don’t have to be reassessed until 2020. That’s almost four years of not panicking over it, unless someone reports me because they saw me standing up from my wheelchair. I don’t trust the abled public not to be vindictive arseholes almost as much as I don’t trust the DWP not to send letters to terrify us just for shits and giggles.

And that’s the good news.

The other sort-of-good news is that I filled in the Council’s homelessness help form and I “may qualify for help”. Heartening. Now I have the next form to fill out, which I’ve already done (albeit before being given an eviction date), and it’s coming up on a year since they received it and I’ve still not heard back…hmm. Hopefully they’ll let me submit another one.

In other trying-to-prevent homelessness stuff, I’ve been looking on various websites for places to rent (with housing benefit) and one thing is standing out to me: nowhere, including dssmove.co.uk, which specialises in properties which accept housing benefit, has an option to search for wheelchair accessible properties. I did find a website claiming to list all accessible properties available to rent or buy in the UK but when I checked yesterday they had precisely 0 properties that met my conditions (to rent, in UK).

Other things:

  • My therapist has left the CMHT, which would be sad if I’d heard from him at all (aside from his farewell voicemail) since September. Still no word on when BPD group sessions start, so chances are I’ll have moved out of the catchment area by the time that happens.
  • Still no joy getting a gut specialist appointment because I need to submit a stool sample first in case my obvious gastroparesis turns out to be H Pylori (hint: it isn’t). Trying to produce a stool sample with gut dysmotility and a stomach that won’t empty, at the right time of the morning to rush it down to the GP’s surgery… let’s just say it’s been *months* and it hasn’t happened. I asked my GP for a blood test instead and the hospital threw it away as they “only test stool samples”, and breath tests are only done on inpatients. Hell’s bells…
  • It’s still my job to keep calling Stanmore and finding out whether they have reopened the waiting list for the pain rehab program.
  • New GP seems fairly disinterested in helping me to find an accessible dentist or referring me to the hospital’s community dental clinic. Must push.
  • Occasional suicidal ideation, mostly when I think about being placed in temporary housing – specifically B&B/hostel type places like when I was homeless at 17. I remember the fear and the desperation, and my brain goes “better kill yourself before it happens again”. No brain, stop it.

I’m using a lot of distractions this week. Mostly Poirot.

 

untitled (kicking against the tropes)

26 Monday Sep 2016

Posted by in Poetry, Uncategorized

≈ 2 Comments

Tags

, ,

I am not a good cripple
I am not brave or inspirational
I was not a courageous child
Nor injured in war

I do not bear my cross with grace and patience
My honesty is unpalatable, humour too morbid
Cousin Helen can go fuck herself
I create uncomfortable silences

There is no yearly event for me
My illness is not marketable
I am not “battling” anything
(It’s a war of attrition)

I am not a good cripple
Sympathy makes me sneer
I have to choke out thank yous
And pretend I don’t resent it

The Nearly Universal Cupholder

05 Monday Sep 2016

Posted by in Disability, Reviews

≈ 4 Comments

Tags

, , ,

Yes it’s a product review. I’m sorry. But it’s also my first one so please show leniency.

I wanted a cup-holder for my wheelchair. Sure, without both hands taken up with crutches I can hold a coffee, or put a bottle of water on my lap, but it always leads to confusion, stuff-balancing, cold legs, hot hands, or a mix of various pains and faff. I was given a cup holder meant for buggies a while ago, which needs a cylindrical frame of a certain diameter to fit.  However, my powerchair doesn’t seem to have this at all, except in places I can’t reach. Unhelpful. Most wheelchair cup-holders I could find seemed to be clamp-based which wouldn’t work on my chair either, due to the hardware under the arms.
I’d been keeping an eye on the Nearly Universal Cup Holder for a while on Amazon UK, torn between the reviews (overwhelmingly positive) and the price (£17.95 – a little prohibitive for what is essentially a piece of plastic and some Velcro) but in the end after yet another frozen-frappuccino-hand I decided to give it a go.

File_000 (1)

Setup was pretty easy – I was concerned about the amount of hardware underneath the arm as Quickie powerchairs are wont to have, but the Velcro straps were no problem. Without using the extra foam pads provided, there was only about a 1cm give each way when gently jiggled. It’s easy to remove, if you have to squeeze into a tight gap (and I would recommend removing it if you’re not totally sure, in case of breakage).

I recommend this product if you have a wheelchair or powerchair with standard width arms (mine are just over 2″ across) – and if you’re not sure if it will fit your chair, the OH-4 website has a contact form so you can check before you buy (you don’t have to buy from the USA website – it’s on Amazon UK).

Happy drinking!

Update, Dec 2018 – I’ve now been using this product for over two years and it’s held up remarkably well. It’s more robust than I’d imagined – I often use the cupholder to hang my shopping bag off too and it hasn’t warped or bent at all! This durability makes it incredibly good value for money in my eyes.