Picking my battles

Unfortunately I had to gently complain about an ableist comment that someone made about/to me last week. The comment had been shouted across to someone (it was about my access needs) and that had been my biggest issue with it. It’s one thing to say something inappropriate and ableist to me, it’s a whole nother ball game to shout it for hundreds of people to potentially hear. It was in one of my favourite places and the person I complained to I’ve known for a few years through there. She commented that I’m always patient with them.

And I thought “I’m not. “

I’m not. I’m picking my battles. If I go in screaming and shouting about what he said to me and how it was said I ruin the rest of the event for me. Or I get a reputation and that makes me uncomfortable. Or it becomes difficult to go back there because of what got said. And that’s somewhere I really enjoy and go to at least once a week.

And also, as I seem to tell CAB clients fairly regularly, taking the emotion out of it gets better results because yes it’s shit what happened to them but if you complain calmly people hear your point, not your anger.

But it’s about more than picking my battles. It’s about the fact things like this happen all the time and I’ve become a bit conditioned to it and ground down. Not to mention how exhausting being angry all the time can be.

There are many more moments like that where I either know it’s going to take more energy that I want to spend or I just can’t be bothered and let it go, than there are ones I complain about.

Later that weekend I posted to the CP group I sometimes use about it. I was trying to comment on the “you’re so patient” view vs the reality. And several people said what had been said wouldn’t have bothered them. One told me I needed to learn to pick my battles because it would be freeing and what had been said wasn’t a big deal. To be honest that pissed me off more than the original ableist comment. I replied that I do pick my battles but it was something that mattered to me. #

Then I decided to pick my battles and left the group.

Realistic

I’ve been thinking a lot over the last week or so about how having a chronic condition or disability shapes your thinking and how this can be taken by those who don’t have the same experience (this is a topic I thought I’d written about follow a similar incident back in 2017 but I can’t find a blog. Which suggests it may have been a social media rant and lost to the abyss).

When I went to lymphoedema clinic recently my legs were still the same size as when I was last seen in clinic in March. And the specialist nurse I see told me that she thinks it’s likely the swelling has reduced as much as it’s going to. No one is saying it’s never going to get any smaller, but the thought is it’s now unlikely and the goal for next time I go to clinic is for things to still be the same – i.e. stable. Which given that heat is known to make lymphoedema worse and when I went last summer my measurements were worse than the time before would be a huge thing.

I’ve known since the very first time I went to clinic in November 2017 that they didn’t expect to be able to completely resolve my swelling and that whatever happened I would need to wear compression for the rest of my life to maintain it. And as much as several of my carers told me how much smaller my legs were and how I was “definitely going to need smaller wraps” in the week or so before, I thought things hadn’t actually changed and I was half expecting this to be the outcome.

I’m fine with it. Things are so much better than they were before I started wearing compression, and I could never have imagined things would have improved this much. If this is it, so be it. I’m more comfortable, transfering easier, significantly less risk of complications and skin breakdown. Time to figure out what maintenance looks like (I’m currently being told I’ll need the same level of compression but my previous nurse told me last year she thought it might be a tiny bit less so who knows).

A few people have heard this news and immediately been pushing me to do more. Telling me how I shouldn’t give up and that I can “prove the lymphoedema nurse wrong.” even when I say that actually I’m fine with this and I don’t want to prove her wrong because this is better than expected one person pushed me again “so, you’ll prove her wrong again.”

But my sitting here saying “this is OK, I’m not bothered if things don’t get any better.” isn’t me giving up, being pessimistic, or negative or any one of a thousand words that me and my disabled friends all have stories of being accused of when we say we don’t want to pursue a cure or can’t do a particular thing, or think a treatment isn’t for us.

It’s me being realistic and recognising that I have done absolutely everything I can and that I’ve been advised to do to manage my lymphoedema. It’s the recognition that the things I could maybe do more of might not achieve any further reduction and if they do are unlikely to improve my quality of life any more.

I realise that everyone is just trying to encourage me and be supportive (and it is people who don’t know me too well who have made the comments). And I know it’s my having lived with CP my whole life that shapes my thinking like that which is perhaps why it’s hard for some people to understand it. But I felt like all the “you can prove her wrong” type comments were putting pressure on me I didn’t need and weren’t what I needed.

As all three of the members of the team I’ve seen have told me managing a chronic condition is a balance and I need to find a way to live my life whilst navigating all it takes to manage multiple disabilities. And that means being realistic and not being upset if I go to clinic next time and things are still stable. Not putting my life on hold whilst waiting for a new treatment, or even a cure that may never come.

“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.

You Know You’ve Got CP When…

…you don’t know whether to post an “argh terrible disaster it’s all going wrong crisis.” status update or a “oh wow this just happened I rock” status update – and the two things relate to different parts of the same incident.

So it was something like 11:30pm last night. I’m on the computer and beginning to think about bed but I’m waiting for something on here to finish. I decided to leave it on and go to the loo, start getting sorted.  I’m in the hall, almost to the bathroom when something happened to my manual chair and not only wasn’t I moving but it had dropped in one corner and I was half in and half out the chair.

My powerchair is also in the hall so I try a couple of times to get myself up but I can’t. I have to ring my parents. My Dad answers and it turns out I’ve woken him up. He comes down and lets himself in and I’m really surprised that I didn’t fall out in the ten minutes it took him to get up and get here. I’m sore from having my leg in a position it doesn’t like and that triggered a ton of clonus (which I rarely have any more). Whilst I was waiting for him I’ve had a better look at my chair and I think one of the castors has snapped all the way off as it’s in a really wrong position.*

Dad tries to help me up and can’t. I say I think I’m going to have to get on the floor but he tells me no because he won’t be able to get me off the floor and we’ll have to call an ambulance. He folds my walker and manages to get it round in front of me but even with that I can’t stand – it’s too low with the way it’s fallen and I’m slipping more and more forward (and out) with every attempt.  Can’t bring me my powerchair to try to get into as it’s behind me and my hall isn’t wide enough to get it past.

It’s gonna have to be the floor. Which we’re both thinking means a call to 999.

I did a semi controlled fall to the floor. Dad grabbed my arm to help me control it as much as possible which is probably the only reason I didn’t hit my head as I suspect I don’t have enough control of my trunk otherwise.

Dad moved my manual out of the way and I started moving towards my powerchair. If my last proper fall is anything to go on I am getting a visit from the paramedics but my fixing this myself needs one proper attempt first.

I can’t crawl but I can move myself by doing a sort of rocking from side to side slither on my tummy (it’s not commando crawling)

I’m moving. This is good.

I get myself up on my knees on my first attempt leaning on the powerchair. This is even better.

Then I have a few moments knelt there trying to figure out what’s the best way of doing this. Pressing down on my cushion was my first thought but didn’t feel right.

I’m levering myself up. I’m getting more and more up and convinced that I’m going to get so far and lose it and crash down. So far I’m not really injured and I know when I do crash down it’s going to hurt. But I need to attempt this.

Only it ended with me up and twisting round and into the powerchair.

Neither Dad or I are quite sure how that happened (my last fall I was on the floor for over two hours and it took 2 people to get me up. I was covered in bruises for days after from both the fall and my failed attempts to get up).  Mum told me this morning that Dad went home and told her “she just got herself up.” She was also shocked.

I’m sat there and I’m shaky and full of adrenaline and tears and panic because that moment when you go from fine and moving to stranded and about to fall is scary as shit.  This is something that actually I need to write more about at another time.  And I feel bad because I woke my Dad.

But at the same time there’s another part of me that’s sitting there thinking “holy shit I just did a floor transfer.” and kinda wanting to grin and shout from the rooftops that I did it.  (I suspect adrenaline had a role in that and I may not be as able if it wasn’t an emergency)

*It turned out to be really bent rather than snapped. This was taken after Dad straightened it a little. the very badly bent out of shape castor on my manual wheelchair

So Take Me As I Am

(title is a lyric from the Meredith Brooks song Bitch)

A couple of weeks ago I was asked how I’d enjoyed a show I went to by a member of staff there who I know. I had enjoyed it but there had been one thing that had happened – which was tangentally access related – that had really irritated me.  It was totally inconsequential and unlikely to be repeated but it had had an impact on my enjoyment and they asked so… I said “If I could just make one slightly bitchy point….”

More recently than that I discovered that the actions of someone else have left me with a huge mess to sort out. I feel more than a little screwed over and beyond frustrated as I did everything I was supposed to do but the person who was supposed to do the next part didn’t and because they didn’t do it at the correct time they now can’t.  And I’m the one who will lose out if it’s not done so I need to do it.  Their failure makes me look bad.

I was ranting to a good friend about that and I said “I know that this is really bitchy but I hope X happens because of this”

She stopped me and said “that’s not bitchy at all.” and made some other comments about thinking I’m acting like a bitch when I’m not.

I say stuff like that all the time when I complain or raise issues.  Phrases like “I don’t mean to be a bitch but…” cross my lips all too frequently.  And really they shouldn’t.

Complaining or raising issues in a constructive or fair way is nothing to be ashamed of. It’s only right and I’m sure that if able-bodied people had to deal with half the crap I have to they wouldn’t be half as calm and dismissive of it as I can be.  Recently a few things have happened which have made me realise just how abnormal my version or normal really is.

A third issue – one of disabled toilet accessibility – reared it’s ugly head. I really thought all the able-bodied people around me were blowing it out of proportion.  It was just one of those things. It happens and it’s irritating as hell and it really shouldn’t but what can you do?!  There were a couple of ways I could work around it and I’d almost never go there again anyway as I was unlikely to have a reason to.  I knew I should complain about the issue and have something done but it happens a lot of places and I was in the middle of dealing with the second incident I mentioned above and just didn’t have it in me to do anything about it.

When one of the people running the event (not the venue) asked me about it I did tell her about it. I told her it both was and wasn’t an issue and had to stop myself talking it down. I don’t think I did a good job of that. And one of the things I told her about was how I worry that people will think I’m alway moaning or never happy.  That I’ve heard those phrases along with “ungrateful” and “argumentative” many times and “you have to understand we’re doing our best” and “we don’t really get many wheelchair users” are among the stock excuses.  It grinds you down.  I wonder, sometimes, if part of the way I so often almost apologise for my complaints or put myself down by phrase it as “being a bitch but” is because subconsciously I think that’s the only way I’ll be taken seriously.  I think the person I was talking to go it and she reassured me they don’t think that about me.

Only.

Later in the session another member of staff wanted to ask me about it. Fine. They wanted to know – was there actually a problem or was the problem that I have a new wheelchair and I’m not used to it yet?  I took her and showed her how it wasn’t big enough for my chair and she got it. But talk about proving my point!

I wish that was my only example of that sort of thing from recently.

It’s not – last Sunday a well known pizza chain refused to serve me because they had a booking for a short time later that they’d chosen to book all of their (small) downstairs for and they had no lift. They had no desire to come up with a solution (I could see from how they had it laid out that a small rejig could have fitted a table for me and my friend in too) and didn’t even apologise. It was clear that they considered I had the problem not them.  And a request I made early this week to another organisation for an explanation why something had happened resulted in my receiving an email Friday that didn’t explain it and basically suggested I should put up and shut up. Again, I was the one with the problem not them.

My friend above who made the comments about thinking I’m being a bitch when I’m not is right, I should stop doing that.  But it’s a bloody hard habit to break when society is desperate not to take me as I am but to blame me for it instead.

“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.

 

 

It’s Okay

For me blogging is an outlet. And it’s a pretty good one.  I’m generally very open in what I share about myself although I try and protect other people’s privacy.

I’ve been blogging for fifteen years and in that time how and what I share has changed.  I’ve been quiet on my blog lately because that seems to be going through another change. Not really a welcome change. I welcome comments and questions and responses to my blog – the majority of which come through twitter nowadays. That’s brilliant. But there are some people who seem to read a completely different story to what I’m writing – One time someone took a mention of a medication to mean I was really ill and sent an email they were coming round to look after me. Luckily I was able to stop them. I don’t want to stop people reading my blog but it’s stressful if stuff like that happens.

So I haven’t felt as comfortable blogging. Almost as though I’m losing my blog because it can no longer be my outlet. I hate that and I don’t want it to happen. And now I have a piece of news that previously I’d always have shared. I want to share it but before this happened I told a friend I thought it would happen. It’s not upsetting news but as we were sat having our drink in a crowded cafe they cried.

I was diagnosed with lymphoedema this week (NHS choices link). I’ve been describing it as a complication of my having CP but it’s more accurate to say it’s a complication of my being a wheelchair user. I just have the swelling.

I’ve had obvious oedema in my legs for years – even in the winter although it gets worse in the summer. And this year it seems to be a lot worse and several people have raised concerns to me and suggested I needed to see a doctor/get meds (it was my saying I thought I might need meds that upset my friend). I wasn’t that concerned because I pretty much knew that it was a wheelchair thing. But it was bad and it was getting stressful with all the reactions so I did go to the doctors.

She diagnosed it as lymphoedema and said that as it’s not life threatening and it doesn’t usually bother me there was no need to treat it if I didn’t want to. We talked about my options and at the moment I’m declining the referral to a specialist for various reasons. I am however having a month’s course of diuretics (40mg of furosemide daily). The dr isn’t sure it’ll work for it but said it’s worth a try. If it does work I’m going to have a second month of them. So far I think they are making a difference but it’s too soon to know for sure.

Having lymphoedema isn’t a good thing. But it’s also not a bad thing. I need people to understand that. I’ll probably have it to some extent for the rest of my life. That’s the luck of the draw when you’re in a wheelchair all the time. And that’s fine. I have meds, I have choices and I’m happy with how things are. It’s okay.

I’m going to tell you this. Dealing with it is probably easier for me than writing a blog about it.

Rotation Curation for #Disability #rocur

I’ve been curating the @OxfordIsYours twitter account.  It’s a RoCur (Rotation Curation) account for Oxford and the person who runs it said living in Oxfordshire counts.

Basically RoCur is where there’s an account (often on twitter) where people take a week at a time to run it and share their experiences and tweet on the subject.  Most of these relate to places – like with Oxford Is Yours I’ve been tweeting about where I’ve been and what I’ve done – but some relate to hobbies or jobs or organisations or anything else.

I’ve been enjoying it and have learned about a place in Oxford I’m going to visit soon I didn’t know about. I’ve also met a couple of new tweeters who I’ll follow from my own account when the week is over. And possibly have a couple of other places and events in mind I’d like to go to the logistics of which may prove tricky as they aren’t in places I can get to easy.  That’s basically the point of rocur – to share tips, tricks, and experiences and recommend places and venues.  The person who runs OxfordIsYours said to me last weekend she was looking forward to reading a week in my life and that’s basically what it is.

Admittedly days like today when I’m close to home and not doing very much it feels like a struggle to have anything relevant to the account to tweet. But on the whole it’s been an interesting and fun experience and I’m glad I’ve done it.

I’d really like to have a go at curating People of UK for a week.  But what I’d really really like is for their to be a disability rocur.

And as far as I can tell there isn’t one.

I’m thinking about setting one up.  I know of one other person who is interested in taking part. But I think we need more than that to set it up.

So I need help to do that.  I need to know if people are interested in that.  And if so

I need people to be curators.

I need people to signal boost this message

And I need people to read and comment and tweet and just generally try to use this as a way to make our already pretty awesome disabilty community online better and more of a community.

I was asked on twitter what definiton of disability I would apply and I’m going to go relatively wide and say you simply have to self identify as disabled.  I am however going to specify that this is not at present open to carers because I want it to be a space where disabled people can share and speak for themselves.

Once I know that there’s some life in this idea and people are interested I will write up some more guidelines with specifics but basically it doesn’t just have to be about the disability side of being a disabled person.

Let me know in comments if you are interested or tweet me @FunkyFairy22

 

Emma, Elsewhere

If you were looking for a blog post from me today you’ll have to wander over to Disability In Kidlit where a discussion post I contributed to has just been published.

Say What You Will is a YA book by Cammie McGovern where one of the main characters has CP and the other OCD.  If you’re like me and in the UK you’ll find it in book shops under the title Amy and Matthew.

***This link contains spoilers but this post on my blog hopefully doesn’t***

Emma Crees, Courtney Gilfillian, and s.e. smith review SAY WHAT YOU WILL

I really enjoyed the discussion and getting to chat with Courtney and s.e.  It’s a long time since I’ve got to chat disability with knowledge people with similar views to me.  And to get to do it in the context of a book was even better.

I liked the book more than I think comes across in the review until I started thinking in depth afterwards about how sucky the disability aspects were. I don’t think I’d recommend it though.

It was obvious from the word go that the disability stuff was a bit OTT and bad but then when I started chatting with my fellow contributors and thinking about the whats and whys.  I think it’s easy when you’re reading a book and caught up in the plot to overlook the sucky bits but not when reviewing and discussion.  And I wouldn’t want a teen I cared about with either CP or OCD (or actually any teen) to think the portrayal of the characters and the way they were treated was OK.

Should have sold more copies

As I wrote on one of the earlier prompts I can’t help thinking this “Should have sold more copies” prompt is a bit samey with two of the prompts that have already been done. See here.

I don’t keep track of the number of copies that a book sells.  I might have a good idea of how popular something is because of reading stuff online, particularly on twitter, blogs and goodreads (facebook, less so) but numbers no I don’t.  No idea either of what sort of numbers sold would be considered below average, normal, good, outstanding etc.  I might google that because now I think of it I’m intrigued.  But at the same time I probably won’t because I doubt I’d find a straight answer.

So I can’t really list a book that should have sold more copies most because I don’t know how many copies it sold etc etc.

But let’s go with Don’t Call Me Inspirational: A Disabled Feminist Talks Back by Harilyn Rousso.  I read that maybe six weeks ago and I’ve been meaning to blog about it in combination with a couple of other disability memoirs but I’ve not read the last one yet so I’ve not got round to writing that blog.  Maybe I’ll write it when I have, maybe I won’t.

Visual description: The cover of Don't Call Me Inspirational: A Disabled Feminist Talks Back by Harilyn Rousso.  It features a head and shoulders self portrait of Harilyn Rousso with a blue background.
Visual description: The cover of Don’t Call Me Inspirational: A Disabled Feminist Talks Back by Harilyn Rousso. It features a head and shoulders self portrait of Harilyn Rousso with a blue background.

Harilyn Rousso is an American woman with CP (I think she’s in her sixties?) and this is her memoir.

I liked it a lot and felt like I could relate to a lot of what she wrote about.  We had similar experiences in some ways and very different ones in others.  Part of that will be because Harilyn has a greater level of mobility than I do but the rest will just relate to simply being different people.

The book is a series of short essays I think is the best term on various aspects of disability and Harilyn’s life.  I found them all interesting and unlike other essay type books I didn’t find them rushed or feeling like a topic wasn’t covered in as much depth as I’d have like.  This might be because all of the essays are by the same person.

Some of the work she has done and projects she’s been involved with sound brilliant and I wished I could have been involved in something similar.  It was interesting to see the disability movement grow thoughout the situations she discussed.  She also did some work with young disabled teens and this is something I’ve always thought I could have benefited from and most of all that I’d like to do now.

I’d really recommend this book to any disabled person because it brings a real feeling of reading about someone like me and I liked that.  But it’s also a good book for parents or carers of disabled people to read or really anyone at all.  As long as they approach it with an open mind.