The Most Supportive Thing

I wrote an entry a while ago about blog posts I’d been wanting to write (I’m really good at starting things…) this is part of one of the posts, there maybe a part two at some point but not any time soon.

Last week (before the phone call about self-isolation) I had a problem with the carers. No one turned up to do my call and then when I eventually tried to call them to chase it up (much later than I should have because I kept thinking “someone will come soon”) I couldn’t get through on the phone, repeatedly. Once I did manage to get hold of them it was really quickly sorted.

And I appreciated three things about it.

I was grateful that in almost 11 months with this agency this is the first major problem like that – and the first time I’ve had to chase where a carer is. I’ve previously had to chase other agencies on practically a weekly if not daily basis.

I really appreciated the carer’s honesty when, after coming running up the path to my front door, she said “sorry, Em, my fault.” Because that takes a lot of guts. Particularly when due to care being confidential she could have just not mentioned it or said something non-committal like “been a bad morning.” And I used to catch the care agency before in stupid little lies about stuff like that all the time. But I did also have to wonder when she started calling me “Em”.

But what I really really appreciated was that when I sent a letting off steam message to a friend of mine saying “Argh carer’s over an hour late and I can’t get hold of the agency.” she sent the perfect message back.

It said: “Argh.”

One thing I’ve struggled with, particularly since starting to have carers/wear compression, is people wanting to solve my problems. I’ve had a lot of people getting angry on my behalf about things. Trying to justify to me or explain why things have happened. Tell me I shouldn’t let things annoy or upset me.

I do realise that it comes from a place of wanting to help me, trying to be helpful. And perhaps it’s how they would like to be supported if they were in that situation.

But whilst I am grateful to have people who wish that for me and have been trying to help. Sometimes I just want to rant, to let off the steam. It feels like nobody wants to be the one to do this – I think it makes them uncomfortable to sit with people in their painful moments – but sometimes I don’t want a solution or people’s anger or justification. I just want to tell you something’s happened that’s upset me.

I’m not just talking about problems with my care here but life in general. But sometimes the most helpful, supportive, useful thing people could do is let me tell you it’s shit and just hear me. All you have to say is “yeah it is.”

The Things I Can’t Do

Someone declared a few months ago that there “must be lots of things I want to do but can’t.” They mentioned someone they knew was ill (I believe – had been hospitalised anyway) and was finding they couldn’t do stuff. I think they may have been venting frustrations. I said no, I didn’t know how that felt because I can do everything I want to do.

From her reaction, I don’t think she believed me and I ended up back tracking and justifying that statement by pointing out that I’m lifelong disabled so I’ve never known any different (I am annoyed with myself that I allowed her to make me feel I had to do that).

She is right that there are things I’d like to do but can’t

  • I can’t do everything I want to do in London this week as they are too far apart to fit in.
  • I can’t see most of my friends as often as I want as they are too far away
  • I can’t go to the gym more than once a week as the best session for me is only on once a week
  • I can’t write all the stories and other things I want to as I don’t have the time.
  • I can’t stop buying books and yarn despite all the unread and used items in my flat.

But she’s also wrong. Because everyone, disabled or otherwise, has things they want to do but can’t. And the things I currently can’t do are due to life and circumstances. Not due to having Cerebral Palsy or being a wheelchair user.

“She’ll run you over”

There are a lot of allegedly jokey comments that people make about or to me as a wheelchair user.  Usually well meaning and perhaps an attempt at being funny. They aren’t funny.  Most of them never were but one or two may have been if not for the fact that I hear them all the time. 

I’m talking about the “women drivers” comments.

The people who say “do you have a license for that thing?”

Those who randomly see me and go “no speeding!”

And many others.

I often roll my eyes at that sort of thing and let it go because it’s usually strangers and theres no point getting annoyed about that.  When one of the assisted travel guys at London Waterloo put the ramp down and after I drove down it went “who says women can’t drive?!” I asked him if there was meant to be a compliment buried in there somewhere. And he didn’t really answer.  But he was there to get me off the train the next time I went and just said hello.

The comment that really gets me though is made when parents on the street are trying to get their child out of my way. I heard it earlier today and yes the child was taking up space but it wasn’t a huge issue.

It’s “she’ll run you over if you don’t move.”

A lot of kids don’t know what a wheelchair is and don’t know what to make of them. I don’t like the nosy inappropriate questions I get from adults and older kids but if I have the time I was always answer young ones because it’s genuine curiousity and normalising disability (and in my case specifically wheelchairs) is important.
Even if you tell me to or give me permission to I’m not going to run your child over (and I have heard “I’ll let her…” and “I’ll tell her to…”before). Comments like that make my disability and my chair something to be wary of. I’m sick of being made out to be the big bad wolf to be scared of. 

I am not a threat to get your child to do what you want. Stop using me as one. I’m a person the same as everyone else – I just spend my life on wheels.

“Well”

Earlier this week I was talking to an acquaintance who was saying I handle things very well.  They’d been around when I’d found myself struggling with access woes a while ago and been impressed with how I handled it. It’s not the first time since that this has come up. They mentioned that I’m not the only disabled person they know and the others get angry in ways I don’t. I think it is – or was meant to be – a compliment.

I’m not sure I did handle it well. I’m not sure it’s a situation that can be handled well – life doesn’t come with a handbook for what to do when yet again the wheelchair access you’ve been promised isn’t there.

And these are situations that often seem to end up with victim blaming “oh well we weren’t planning to invite you but we had a spare space” was one line I heard last year “We don’t get many wheelchair users” is another I’ve heard many times before and of course there’s last week’s “you’re using the wrong door“.  “Trying to do something nice for you” “my brother’s best friend’s mum’s sister uses a wheelchair and she can manage” and many other comments along those lines have been said over the years all of which give the idea that it’s not actually the lack of wheelchair access that’s the problem, it’s me that’s the problem.

So sometimes I handle something quietly and with a calm I don’t feel.  Because whilst I’m not worried it’ll cause a scene but the memory of that victim blaming cuts deep and can’t be forgotten. I don’t want people to stop inviting me to things because of that and some reactions have made me worry that might happen. Or because I might start crying if I don’t.

Occasionally experience has taught me that in those particular circumstances things might not be ideal – so I’m prepared for shit access. And nothing helps you handle it well better than a complete and utter lack of surprise.

But there are two other reasons why I may be reacting to an access problem better than you expect.

Because this my normal. And sometimes you’ve paid the money, looked forward to the event and made the journey. You’re there and you can do nothing but make the most of what you’ve got.  Do what I can, enjoy what I can and consider afterwards whether it’s a lesson learned, a don’t go there again, a complaint or an “actually that worked better than hoped.” Because sometimes, rarely, but sometimes nonetheless people are faced with a wheelchair user struggling and access being worse than expected and really come up trumps with help and solutions to improve things.

Or perhaps I’m just exhausted. Tired of having this problem all the time and lacking in the energy to make a fuss once again when it’s unlikely things will change.

 

 

“Special Needs”

Language around disability is a really tricky thing. Some terms are acceptable to some people and completely unacceptable to others. Some are fine for disabled people to use amongst themselves or to refer to themselves but problematic when used by strangers.  And there are times when disabled people argue amongst themselves about the terms.  People first language and identity first language are two of the biggest culprit’s there.

One term that I’ve been saying I don’t like and arguing against for the last few years is “special needs”  I can explain why I don’t like it but it’s something I find others always agree with although some people do come to see my point after I explain even if they don’t agree with me.  Basically as a disability specific term it makes no sense.

For the last few days I’ve been reading The Curious Incident of the Dog in the Nighttime by Mark Haddon.  I finished it this evening and it’s safe to say it’s one I’ll be thinking about for a fair while.  The main character is Christopher, a teenager with Asperger’s Syndrome.  I’m not qualified to comment on his portrayal – I liked him as a character but I’ve heard and read various things from people who are on the autistic spectrum that it’s quite problematic. Which unfortunately isn’t that unusual when a disabled character is in a book.

But that’s not what I wanted to blog about.

There’s a moment in the book when Christopher is talking (as narrator) about the term “special needs” and it basically sums up what I’ve been saying about why I don’t like the term. It was a big “yes!” moment of validation for me. So instead of explaining my dislike I wanted to share the quote. It’s one of those that if I was sharing a link to it on twitter I’d probably just caption it “this.”

“All the other children at my school are stupid. Except I’m not meant to call them stupid, even though this is what they are.  I’m meant to say that they have learning difficulties or that they have special needs. But this is stupid because everyone has learning difficulties because learning to speak French or understanding Relativity is difficult, and also everyone has special needs, like Father who has to carry a little packet of artificial sweetening tablets around with him to put in his coffee to stop him getting fat, or Mrs Peters who wears a beige-coloured hearing aid, or Siobhan who wears glasses so thick they give you a headache if you borrow them, and none of these people are Special Needs, even if they have special needs.”

– From The Curious Incident of the Dog in the Night-Time by Mark Haddon (chapter 71, page 56)

I is for…

I is for Impossible

As a disabled person and particularly as one who is both life long disabled and a woman there can be a lot of barriers in my way.

Actual physical access is the big one although awareness of that and facilities are improved a lot and the amount they’ve changed just within my lifetime is huge.  That’s not to say there isn’t a long way to go because there is.  I just read an interesting blog by Anika about that.

Attitudes and awareness are in many ways a much bigger barrier.  If people refuse to understand why I can’t be carried down a flight of stairs or tell me to stop making a fuss then access can’t improve because they don’t understand.  And understanding is huge.  I recently tweeted a shop in a town I was going to visit and asked if they were accessible.  They replied “the shop is wheelchair accessible, just a step to get in.”  Which, if you know about wheelchair access you’ll know means it, in fact, isn’t accessible.

Today I’ve been trying to book a weekend away.  I’m undecided about where I want to go and after poking round and places to go and things to do I took a look at hotels.  The website of one of the chains didn’t have exact accessibility details online and their twitter person told me I had to phone the actual hotels I was interest in.  The first had accessible rooms but not ones that I can access. So then I had to phone the other hotel.  That does have rooms that meet my needs – in fact all of their accessible rooms meet my needs – but it’s a way away from the centre of town and all the places I thought I might visit.  That town is doable in a day from here so I’ll maybe do that instead.  And as for a weekend away I think my second choice of city to visit might be back in the running.

And sometimes my own attitude and experiences can be a barrier to doing things. After 30+ years as a wheelchair user it’s easy to be jaded and think “the last time I travelled to that train station things went wrong” and not go there again.  Or “I heard that chain has a terrible rep for access, I’ll give it a miss”.  I try not to but it’s easy to fall into the trap.

People will often tell me not to do stuff – that I won’t be able to.   I have a bit of a habit of proving them wrong.  I used to say people should never tell me I couldn’t do stuff because it would just make me determined to prove them wrong.

Now I am older and perhaps wiser I rarely say that.

I can and do point out to people that I can do things they think impossible for me.

“This isn’t recommended for people with mobility problems due to long distances involved” – not a problem I use a powerchair and it’s got good batteries.

“Sorry, there isn’t accessible tube on the route we’re taking, so hope you don’t mind not coming” – if I get the train to a different station I arrive in London at a place that does have accessible tube, I’ll meet you there.

“don’t go in there, there’s no room for you to turn round you’ll never get out.” – I can reverse my chair that distance and turn when I’m outside.

It can and often does take a lot of creativity, some courage and most of all bucketloads of determination but I find that despite what many people think there will always be barriers in may way there’s not much that’s truly impossible if I really, really want to do it.

Fed Up

I’m a bit fed up

of not getting actual answers to my questions but just a stream of talking that dances around the question

of not being treated with respect

of having to point out what should be really obvious

of having people blame things on my disability which in reality have nothing to do with my disability. Only thinking or saying “well she is disabled” makes it easier for them than having to accept and admit  that they fucked up.

of the fear that this time when they’re predicting snow will be the time when it actually comes.

of the words “but it’s your rent money that pays for that.”

of the excuse “not all wheelchairs are the same size” when it’s blatently obvious to all concerned that the dodgy ramp (or other access problem) I’m complaining about is going to be dodgy for me in my very slightly bigger than average chair but also for a parent whose five year old uses a tiny paediatric chair.

of people who complain about things on my behalf without actually seeing if I’m bothered about them

of people who make a big deal about the difficulties they’re having finding a venue I can access without actually checking with me 1) what I need and 2) When I’m the only disabled person whose been invited checking if I’m going to be attending the event.

of having to argue with staff at places I go to regularly because I know damn well they can do what I need for access but the staff member is new and doesn’t know what the choices are so is saying their system says no.

of people making eye contact with the person I’m with and talking about me and not to me until I point blank tell them “look I don’t understand what you mean by this and I’m the one who knows what I need”. and of that person seeming uncomfortable with that.

of being in my manual and having the assisted travel staff at a station I’ve never been to before asking my friends “does she want a push?” (that would never happen at a place I’ve been to before).

of going to shops with broken lifts.  Yes staff offer to get stuff for me but when I just want to go upstairs to mooch that doesn’t help.  Perhaps next time the lift is broken in waterstones I’ll say “yes I want a good look at your sci fi section.  Bring it all down to me. Every. Single. Book.”

It occurs to me as I’ve just finished writing this that I could delete all this and replace it simply with the words “I’m fed up of having to fight to be seen as equal”  but I doubt that would get the point accross.  And that makes me sad.

Self-Care Sunday: Failure

I feel like self care has been a failure this week and I’ve not achieved any of the taking care of myself goals I’d set for this week.

I wanted to eat healthier and I haven’t. In fact a lot of my eating this week could be considered binge like. Or at least some of it.

I wanted to spend less time online and I haven’t. I have reduced my online time a little but not every day and not the large amounts I wanted too.

I’ve not got my med compliance back to 100% either

But when I stop and think about it:
I know that whereas its been my habit for years to pick up a sausage and bacon baguette in town and being it home for lunch up to three times a week, I’ve not done that this month. In fact the only times I’ve grabbed food out have been when I’ve needed to have something before going to something else. It’s not hugely healthier but its a baby step. And does it really matter if I ate an entire packet of chocolate digestives in eight hours earlier this week? No it doesn’t. Because its not like I do that everyday.

I realise that I have spent less time online and some of the time I have been online has been doing very constructive things. I’ve also been managing to update my blog more often this month and that’s something which has slipped in the last few months. I’ve not liked that but not felt able to do much about it. This is my 11th blog entry of the month and I’m pretty sure that’s more entries than I’ve managed in a month for a long time.

Meds is getting there. And I’ve a plan to help with that this week.

It’s that damn big picture again. I wish I didn’t lose sight of it so easily.

Self-Care Sunday

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Image is from Facebook. It’s a photo of what I think is a group of porpoises. The text over the top reads: “Self care is more than just eating healthy. Self care is taking care of you. So if that means eating a heap of chips, having a nap, watching cheesy movies, crying, going for a walk, looking at cats or anything that makes you feel good, do it because you are worth taking care of.

Last year I took part in an NHS weightloss scheme called Oxfordshire weight loss lifestyle services or OWLS. And it pretty much destroyed my self esteem. They couldn’t accommodate my needs as a full time wheelchair user – amongst other things they couldn’t weigh me. This apparently didn’t matter because I would find my condition improved and my meds reduced. Despite the fact weight loss can do neither of these things for me (I asked my consultant neurologist about the meds thing and CP being what it is that was obvious) They kept changing their minds about possible solutions and weren’t open to working with me to fix things. It was completely ridiculous and to be honest participating in it was the biggest mistake I made last year.

Crap like that is common when you use a chair. But this was extreme. I described it as ridiculous, inappropriate and at times soul destroying. I told a friend of mine about it and the OWLS staff reaction to it and she had another term for it. She called it victim blaming.

Yeah. That gave me a new perspective.

I was supposed to receive support for a year. I stopped going after four months. The practice nurse who referred me wanted me to drop out after six weeks. But having had CP all my life I’d learned to fight for my rights and I fought it until I had nothing left.

There were one or two useful bits. But I find it hard to look back at because of the emotional trauma involved.

One of the exercises was to write yourself a letter as though its five years in the future. What would life be like if you didn’t lose weight and if you did?

My letter landed back through my door a couple of weeks ago. I wrote it May 2012 so about 15months ago. It was a bit of a shock and a bit difficult because of the emotions it stirred up. I could remember some of it but I’d forgotten a lot. I’d obviously been in a lot of emotional pain the day I wrote it.

One thing that really resonated was this line:

“I love my life. But I’m not good at loving me.”

My friend Angela had actually spent sometime the day before the card came telling me something along the lines of I’m worth more than I realise.

I’m in a better place in terms of depression and trauma now than I was after the OWLS experience. Realistically I could do with losing weight (although my weight has been incredibly stable this year which is a huge improvement). But the most important thing is for me to be healthy.

It’s time I started taking care of myself properly again. I’m going to do that. And blog about it every Sunday.

The National Diversity Awards

So if I were to mention the name Hannah Ensor or Stickman Communications I suspect a lot of people who read this would know who I meant.

Hannah and I have known each other since our school days. Back then I was rocking the wheelie thing but not quite as well as I do now. I was walking a lot of the time which took a lot of energy and I’d fall a lot. I didn’t hurt myself often having learnt mad falling skills. And the level of acceptance i have now (possibly better referred to as my “sod it quota”) was an unthought of dream,

Hannah was this accident prone girl who was always hurting herself in the most random ways and making us laugh. I swear I have more memories of teenage Hannah turning up to our weekly German lessons on crutches or otherwise injured than not. She denies this 😉

As teenagers often do we lost touch when school ended.

Then several years ago I was in town and someone with a really cool wheelchair was waiting in a queue next to me.

Hannah.

Turns out, she wasn’t as weirdly accident prone as we thought. She had a disability.

I see her semi regularly and sometimes we get together with another friend of ours. Its brilliant. we laugh a lot and support each other and its just great to be with old friends who understand that supermarket pharmacies are rubbish, buying bread in a bakery is NOT worthy of high praise, it is possible to have a favourite type of pain and, frankly, that applying to work part time for the fire service does kind of make sense as a plan for warding off relapses of potentially life threatening illnesses

Hannah’s awesome stickman products help bring a similar sort of education, acceptance and fun to the wider public when it comes to disability awareness. She’s been nominated for a National Diversity Award in the disability category because of this work. I think she deserves it and the more nominations she gets the more chance she has.

She doesn’t want to push it onto people too much so I’m asking here – please nominate Hannah!!

Here’s her press release:
Hannah Ensor, a cartoonist from Oxfordshire has been nominated for the Entrepreneur of Excellence (disability) award at The National Diversity Awards

The ceremony celebrates some of the excellent and inspiring achievements of positive role models and community organisations from across the UK. The awards aim to recognise nominees in their respective fields of diversity including age, disability, gender, race, faith, religion and sexual orientation.

Hannah Ensor lives with HMS/EDS (being far too bendy and falling apart) and PoTS (tap-dancing heart and appearing drunk without alcohol). For her, life with an uncooperative body is normal and the freedom of having a great set of wheels is simply marvellous.

Although initially trained as an Environmental Health Officer, her conditions deteriorated significantly in her mid 20’s and she was medically retired a few years later in 2010. Around this time, Hannah Ensor’s stickmen based approach to disability started as a way to communicate while unable to put a sentence together. It naturally grew into a business – communicating about disability with charm, humour, and unerring accuracy.

Her online shop www.stickmancommunications.co.uk stocks a whole range of her products, from stickers with her ‘Positive Disability Symbol’ design, to ‘differently normal’ wristbands, and Keyring Cards which help the user explain about their disability/how they are feeling/what they need effectively and with humour. From children’s books full of life and laughter – which just happen to include disability as normal, to cartoon gift books suitable for all ages which communicate about various aspects of life with disabilities, with humour and unerring accuracy.

Alongside the shop, Hannah’s blog, peppered with stickmen, works to raise understanding and acceptance of disability, not because she campaigns, but because she writes with openness and humour about her life in a way that is easy to relate to, and her enjoyment of life shines through.
Hannah also works closely with the Hypermobility Syndrome Association (for which she was appointed Patron for kids and teens in 2012) supporting others with her conditions and helping them make positive choices in managing it.

Some comments from her customers:
“Utterly inspiring and hilarious, she’s changing perspectives on disability in a fabulous way”
“I would never have put a universal disability logo on the car because of embarrassment but now I have this positive logo and I love it – I even have it on my kayak and I’m proud to show the world I’m positively different.”
“You have given me hope, thank you very much. I only saw dark days ahead of me but I think I should look at it differently. If I lose the use of my legs then there will be other experiences that I may never have tried. Thank you for being an inspiration with your attitude to life.”

The National Diversity Awards 2013 in association with Microsoft will be held at The Queens Hotel, Leeds on September 20th. Britain’s most inspirational people will come together to honour the rich tapestry of our nation, recognising individuals and groups from grass roots communities who have contributed to creating a more diverse and inclusive society.

Big Brother host Brian Dowling and CBeebies presenter Cerrie Burnell will be hosting this year’s event. The awards have also gained support from a number of celebrities including Stephen Fry, Beverley Knight and Ade Adepitan – and the Likes of Paralympic champion Jody Cundy, and Journalist Amal Fashanu were amongst last year’s attendees.

The largest diversity awards ceremony of its kind has generated great sponsors such as the co-operative Group, Sky, The Open University and Price Waterhouse Coopers.

Theresa McHenry, of Microsoft UK, said ‘The National Diversity Awards are a wonderful way to recognise the extraordinary contribution of real people to our communities. It’s a delight to be able to support this fantastic celebration of local heroes.’

Amongst last year’s winners was gay rights campaigner Peter Tatchell, who scooped up The Lifetime Achiever Award; Trade Union activist Zita Holbourne who was awarded the positive role Model for Race and The Anthony Walker foundation, a charity established following the tragic murder of its namesake in a racially motivated attack.

The National Diversity Awards received an astonishing amount of nominations for last year’s event.

Paul Sesay, Chief Executive of The National Diversity Awards said, ‘if ever there was a time to celebrate and elevate the truly staggering diversity of talent the UK has to offer– it is now’

‘I know another fantastic spectacle of role models will be delivered and recognised this year’.

Nominations are now open and close July 19th 2013 – so don’t miss out on your chance to get involved!

Shortlisted nominees will be announced shortly after this date.

To nominate Hannah Ensor please visit: www.nationaldiversityawards.co.uk
Or for a nomination form please email: emma@thediversitygroup.co.uk