“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.

It’s not what you say

As a wheelchair user there are certain comments, questions, and even jokes about my disability and/or being a wheelchair user that I hear often.  And that’s sort of OK.  I’m used to it and over being bothered by them in most cases.

People (strangers) will ask why I’m in a wheelchair, have I been disabled long, that sort of thing.  Sometimes I answer, sometimes I ask why they want to know.  That usually depends on whether they take me by surprise or not and how feisty and argumentative I’m feeling. And answers to my replying “Why do you want to know?” tend to be interesting too.

But this week I’ve been thinking a lot about how the thing that makes so much of what’s said to me inappropriate isn’t what was said but how and what was said and also when it was said.

Someone I’d just met noticed I have a problem with my feet – which it’s true I have a very noticable problem with my feet and the fact the loan powerchair footplates are in a weird position is probably making it more noticeable.  The comment they made was “that’s a very interesting problem you’ve got with your feet.”  It made me really annoyed.  Now, had that been phrased as a question like “Do you mind if I ask what’s wrong with your feet?” or “my so and so relative has lymphodema is that what you’ve got?” (it is) I would have found it more acceptable.  My condition being described as interesting was not. It’s a judgement and a hint of entertainment (in reality I suspect it was made from a place where the other person was uncomfortable with the situation and trying to make small talk)

And then on another day this week I heard someone else make a comment in a different situation. One I hear variants of all the time.  It’s a jokey one but it’s old and it’s no longer funny (not that it really was in the first place…).

It’s not a comment that’s meant to be ableist but it ends up being so because as a friend pointed out yesterday an able-bodied person would never hear it made to them.

It’s the suggestion (made usually as I reverse my powerchair) that I need to get one of those things that beeps as lorries reverse installed on my chair.

I usually just want to roll my eyes and suggest that said suggestion is a bad idea.  Would they like to be sharing a hotel room with me at two in the morning when I need to get up for a wee and my chair has a reverseing beep? Strangely they always say no.

I’m deliberately not mentioning where I was.  But what I will say was a it was a long, difficult and upsetting day.  And the person who made that comment (complete with actual beep! beep! beep!ing for the first time ever) was there in an official professional capacity and knew that is a situation which everyone finds upsetting.

It really wasn’t the time or place for any form of joke.  It even more so wasn’t the time or place for a disability joke and as I said to another friend I can’t decided if it’s horrific that it happened or if it’s so hideously inappropriate and not funny that it’s become a little bit funny.

A lot of the time I can deal with the comments that people make.  But it would be a lot easier if they realised that they so rarely are new or funny and there really is a time and a place for them.

 

 

 

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

 

Polite Small Talk

I meet usually at least two new people each week through CAB.  If I see them as clients I can often find out a lot about them.  They rarely learn much about me.  I do tell them my  name but often that and the fact I’m sat there in a powerchair is all they learn about me.

I also do resident involvement stuff with the housing association I rent from.  I’ve made one really good friend through that and I’m friendly with several others.  But I’ve met loads of people there.  And also because I’ve done disability awareness talks there for staff and tenants there have been a few occasions where I’ve had to stop people and say “sorry I don’t know your name.” and it’s been a case of “oh I forgot we hadn’t be introduced, I was at the such and such talk you did.”

The thing about both situations is that they lead to a lot of polite small talk.  I’ve never been a massive fan of Polite Small Talk.  And it came to me recently that most of the Polite Small Talk I experience is actually quite ableist.  Well, actually it came to me this evening when I was thinking about writing a ranty blog called “it’s ableism when…”

Today I was chatting with a taxi driver on the way somewhere. Started off he was saying how much easier my chair is to secure into the taxi than a lot he gets and then he was telling me about going somewhere with a disabled friend of his and the venue not knowing how to cope.  What was I planning to do when I got to my destination? That sort of thing.  But then his next gambit in the Polite Small Talk that filled my journey (and which until that point sounded interesting because I’d been hearing about the friend incident and thinking “I must look into this group.”) was “so how long have you been in a wheelchair?”

Ableism disguised as Polite Small Talk has also recently taken the form of “so what do you do?” perfectly reasonable and the follow up “how do you get there?” was also acceptable. But then it was third time’s the charm for the apparently necessary ableism component when they then expressed obvious surprise at the news I go in my powerchair with “oh you can do that by yourself can you?”

In years past there’s also been a rare gathering with my family and another.. Work, and “I hear you’ve a new place” and such like were used for the rest of my family.  I got the all time Polite Small Talk gem of “so have you been affected by any of the disability cuts?”  implied in that was not only “I don’t care enough about you to want to know anything personal about you.” but maybe even “I hope so you lazy scrounger”

And finally, another throwback.  It’s gotta be the always annoying “oh but I was really hoping you could come.” and/or “but it’s only 2/4/15/245 steps we can help you up them, I’ll be really disappointed not to see you.” whenever I decline an invitation because the venue isn’t accessible.  If you really wanted meant that and were really hoping I’d come you’d have found an accessible venue.

(I’m wondering now if I’ve ever blogged the story of how the words “oh don’t let that stop you.” basically changed my life but not in the way the idiot who said that expected)

Apparently people with mental health problems just need to “tell someone”

So Robin Williams has died.  Suicide.  And that’s sad as any death is.

Facebook is full of posts with his picture sharing phone numbers and websites of helplines.  Ones telling people that “suicide is a permanent solution to a temporary problem.”  And declarations that if you’re feeling down, if you have depression to make sure you tell someone.  Friend’s saying that they hope their friends feel capable of telling them.  And similar on twitter and other places.

Here’s the thing: I have a depression diagnosis and I have a lot of anxiety at times which has been recognised by medics although it’s never been given a label like GAD (generalised anxiety disorder).  It’s more than 11 years since one of my friends finally convinced me to go and see a GP about the way I felt.

I’d told someone.  I’d told her.  But she couldn’t physically make me go to the doctors and get help. She kept telling me I needed to and encouraging me to for at least six months.  I’d probably been depressed to a certain extent I had to do that myself (and unfortunately that meant things deteriorated because I didn’t go until I got scared about what might happen unless I did).

Then I went and told a GP.  It wasn’t my GP because my mine was a male and I thought a female doctor would be easier. It was a first step but it wasn’t the solution facebook seems to be suggesting it was.  Telling her wasn’t enough.  I needed her support but I also needed meds and I needed time.

That first type of antidepressants made me ill so I ended up telling most of my carers although I’d not meant to.  Several of them said “me too.” and I was shocked.  Telling people might have been easier if I’d known how common it was. I felt less alone.

I went back a few weeks later for review and I did tell my then GP because really I loved my uni GP because he also had CP and he got a lot of what I went through.  Over the years he’s been one of the few medics I’ve never had to convince that my depression isn’t caused by my CP. He’d seen me a lot in the months before for UTI and chest infections and I don’t know what else routine stuff.  And he apologised to me for missing my mental health problems.  It meant a lot to me but I wasn’t surprised and I didn’t blame him.  I’d hidden it.

And since then over the last 11 years I’ve been on and off of antidepressants.  I’ve told a lot of people about my mental health.

I’ve told friends.  Family. Doctors, counsellors, social workers. Carers and some other people too.

Sometimes it helps a lot.  Sometimes it helps a little.  Sometimes it doesn’t help.  And unfortunately sometimes it makes it worse.

I’ve had the response:

That I’m being silly

That I just need to stop taking antidepressants because they “are addictive and bad for you.”

That of course I’m depressed because I’ve got CP, what do I expect?

That things that have triggered bad times are in the past and I need to move on.

That I’m worrying about nothing

This too will pass

“you think you’ve got it bad I’ve blah blah blah” from a friend who kept telling me to tell her when things were bad.  She still does that now and she gets annoyed if she ever finds out I’ve not told her stuff.  But I’ve never, in more than 11 years since diagnosis been able to have a conversation with her about my mental health problems without it immediately being turned into something all about her.

Offering to listen and encouraging me to tell you about my problems is huge.  But I need you to actually listen.

How could you help someone in a mental health crisis:

Don’t use cliches like this too shall pass or the one I keep seeing today “suicide is a permanent solution to a temporary problem”.  Robin Williams had been undergoing treatment for various mental health conditions for over twenty years.  He had a real, serious illness not a temporary problem.  Calling it that belittles his suffering.

If someone tells you don’t try and make them tell you exactly what it is they have to be depressed or anxious about.  Mental health conditions can and do defy explanation.

Also, don’t make assumptions about causes.  I’m sure some of the counselling I’ve had would have been more effective if I’d not spent so much time trying to get it though the counsellor’s head that the fact I can’t walk had nothing to do with my mental health. The assumptions of a supposed link between my physical disability and my mental health condition make it harder in fact.

Only make offers of support that you genuinely mean.  If someone offers me the chance to talk but then tells me all of their problems rather than listening when I try to take them up on it I usually end up feeling worse because I feel alone and I’m worried about my friend.

Support takes different forms for different people.  I have issues with medication compliance.  Someone demanding to know everyday if I’d taken my meds (something one of my carers tried) didn;t help me.  But when I had a friend who was also struggling with med compliance we would tweet each other and check in every day or two sort of “I’ve managed my meds today, how’re you doing?” that really helped.

Don’t try to force a particular therapy or drug on someone.  Fluoxetine might be really great for people who have depression that worsens around their period.  I was on fluoxetine when I first started raising that issue and it didn’t help.  Sertraline did but all I kept being told from medics was “fluoxetine is good for that, perserve” until finally one switched me to sertraline for another reason.  Friends told me fluoxetine was good too.  It was good for me but it wasn’t the answer.

Just because you recovered doesn’t mean I will.  I care about how you’re doing but when I’m really struggling telling me that I only need six months of antidepressants doesn’t help.  And actually, the standard treatment isn’t six months of antidepressants.  it’s treatment until condition improves and then for another six months to ensure no relapse.

If the person in question is able to lead you in what support they need try to follow them.

But don’t, ever just tell someone to “tell me” if you have a problem and expect that to be the answer.  It’s a first step that you can take to helping them.  Telling you is a brilliant first step for the person with mental health condition.  But living with/treating/recovering from/whatever a mental health condition is a long, long journey.  And it needs more than that first step of talking about it.

Can you actually hear yourself?

Sometimes I think I should start carrying a dictaphone or similar around with me everywhere and recording my conversations.  Because just lately so many people have said things to me – people who I know – and have come across so ableist that I’ve been shocked.  And in a couple of the cases I’ve known what they’ve actually meant and suspected that if I made them listen back to what they said they may well realise how inappropriate their wording was.

In two of the three most recent cases I feel confident that the other person in the conversation didn’t mean to hurt me and was just wording things wrong (and in one case was trying to play devil’s advocate).  But that doesn’t take away the sting and the hurt in hearing people I have an ongoing relationship with (in most cases by necessity although they are friendly relationships built I thought on mutual respect and in at least one case I could maybe see actual friendship developing if we met in a different setting) say things which lessen my worth and discriminate against me because I’m disabled.  I’m not less but their careless comments suggest I am and show a thoughtlessness I didn’t expect from most of them.

Those comments hurt more than similar ones from complete strangers.  Because I’m not just a random girl in a wheelchair to them.  They know that I’m Emma.  And we don’t know each other well so they may well not know very much about Emma but in almost all cases they we’ve known each other a couple of years and we know enough about each other for them to have a pretty decent idea of who I am and what I believe in even if they don’t know all the ins and the outs of what makes me tick and my day to day life.  And those comments that hurt me aren’t being said by the stranger on the street or the woman in sainsburys but by someone I volunteer with. Or who I sail with or who goes to Thursday night crafts or the disability group I chair or the NaNo group I’m part of or whatever.

I can, often, come up with some snappy response that makes it clear it’s inappropriate and ableist.  But sometimes it’s not appropriate for me to do so.  Or I can’t because I’ll lose my shit completely if I do so.  and sometimes like one occasion this week I can’t actually respond properly because I’m just blindsided and left gaping that someone would have the sheer audacity to think that was acceptable. So I flail and try to say something but don’t actually manage to respond how I should. So I just get silently frustrated and wonder if they can actually hear what they’re saying?

And then I think how handy that mythical dictaphone may come in because if I could play it back and make them realise what they’ve said I probably wouldn’t need to say anything at all.

 

Thank You

I’m quite well known for not noticing people waving to me when I’m out and about. Or not knowing who people are when they know me.

Part of that has to do with the fact I meet so many people through things like CAB. I’m usually the only person they deal with but depending on if I’m doing appointments of gateway (10 minute triage like interviews) I might see up to 4 people in one session.

The big thing in training for CAB is confidentiality. One of the points made about it is that due to that you shouldn’t acknowledge clients outside the bureau. That’s easier than it sounds because more than likely I don’t remember them or I think “hmm I know them from somewhere…” There are obviously the odd memorable person. Regulars and such like. But the number of people I’ve met and introduced myself to who’ve then gone “I know you helped me at CAB” and I’ve not known them is huge.

One day recently I was doing some jobs in town popping from place to place.

And in one of them someone saw me and said “oh! Good Morning.” As they walked past.

I replied “Morning” and continued what I was doing.

30 seconds later they reappeared in front of me to say

“You really helped me a long time ago but I don’t think I thanked you properly.”

All of a sudden the stuff in front of me didn’t have my attention any more. I’d been only half listening expecting the usual “bizarre and probably inappropriate comment to a wheelchair user” I so often get. Not that.

I said they were welcome and asked “at CAB?” They said yes and that it’d been “years and years ago”

I’m wracking my brain but I’m getting no where on who this might be so I asked how long “years and years ago” was

It turns out years and years ago was so long ago they had to think for a minute before they could answer. And so long ago I really can’t have been advising for long when I saw them.

We talked for a few more minutes. I had to admit I didn’t remember them. They said how much of a difference I’d made, how often I’d seen them and how grateful they were. They thanked me again and left.

I thanked them and left as well.

Because that made my day.

I can’t write any more about this. Because of confidentiality. But also because even with several days of thinking later I can’t remember them.

A word of advice

For those who don’t know me.

Don’t try offering me unsolicited advice or helpful suggestions about my wheelchair and then go off on me when I tell you’re wrong and calmly explain the reasons why I do what I do and/or can’t do anything else.

Telling me where you saw me cross the road is dangerous is one thing. Repeatedly screeching at me that I’m going to get myself killed when I tell you its the only place I can is upsetting. And talking to me like I’m stupid and telling me that I do have a choice and could cross the road elsewhere is another that shouldn’t happen. Suggesting that you know I can cross elsewhere because you’ve done it with a buggy when I tell you why i can’t and the guy selling drinks backs me up on it begins to make you look like an idiot. And it ruined my evening by hanging over it.

There are good ways of giving me unsolicited advice. Both of these happened to me.

Tell me that you spotted a possible loose bit on my powerchair as you queue behind me in a shop. Back it up with the fact that you work as a wheelchair technician, that its nothing to worry about but worth getting tightened because its very expensive to replace should it fall off. Bonus points if you tell me how to do it.

Or

Sit opposite me on the train. Tell me you don’t mean to interrupt or worry me but you’ve noticed one of my tires really needs air. Listen when I thank you but tell you the tires are solid (but I agree it does look like its flat). Comment that my chair looks like a good bit of kit. Optional: proper English small talk for a few minutes about isn’t it cold and am I travelling far before I go back to my book and you return to your paper.

Writing this has made me remember this funny incident from 2007

Success and a mind boggling moment

I think the problem I’ve been struggling with is mostly resolved.  But strangely having been told that I’d made a difference for the disabled people who come after me it’s actually possible that this solution will just benefit me.

I know they plan to implement this with any other disabled people who can’t use the standard way of doing things. But the cost involved means they’ve had to come up with a solution other than the one they hoped to. Which due to the set up means it could be difficult to implement for others.

I’m waiting for one more answer and to see if things go as planned but I’m happy things have taken a giant leap forward and feeling much more positive.

Although slightly bemused by some of the conversations I’ve had about it. Including one where it was implied that it was a shame I’m not more disabled than I am because then this would have been so much easier for me. I’m convinced they didn’t actually mean or realise what they said but… It’s a definite first for me.

The mind, it boggles

>Ask a stupid question…

>Get a stupid answer!

For various reasons I went out yesterday without the fugly clown shoe like cast shoes on top of my casts


Fugly cast shoes. The ones I have now are too big for my feet (the ones I had that fit went missing when left at the hospital for the few days I was out of plaster earlier this week) hence the clown shoe description.

I went to the supermarket. I was wearing my red skirt which perfectly matches my red casts. Because clearly, matching your clothes and casts is important (unless I want to wear my favourite skirt which clashes but I love, that is…)


And whilst I was in there a woman I didn’t know stopped me and asked what I’d done to need the casts.

I said, nothing, there’s nothing wrong with them.

And she made it clear that was a totally unacceptable answer.

I just went “it’s a fashion statement”

And she gave me a dirty look. But she didn’t get a chance to say anything other than to call bye to my back as I moved away.

I am more than happy to talk to people about being disabled and answer questions. I always have been. But only if they are asked for legitimate reasons.

My life is not public property. Being disabled, using a chair and having my legs in casts don’t people the right to ask questions simply to satisfy their own nosy tendencies. But when I refuse to answer, people are put out.

It did feel good to put her in her place and especially to be flippant whilst doing so.