Not five minutes but five weeks

Today is Blogging Against Disablism Day.

For the last five weeks I’ve been dealing with a somewhat ridiculous access situation.  What I actually need should be incredibly straight-forward. I need to be weighed.  I am not allowed to go sailing until I can confirm my weight to the powers that be. That’s because they’re checking equipment safety. I have no problem with that. 

You can buy scales in Argos for less than £30. But as a wheelchair user it’s not accessible to me. The accessible scales you can get cost over £1000. You can go to the GP to get weighed. I can’t. There isn’t considered to be a need for accessible scales.

 I’m told I don’t need to be weighed,  I can track weight gain or loss through measurements or how my clothes fit. I’ve been having versions of this conversation for years.  But I do now need to be weighed.  To keep me safe and more importantly to keep those helping me at sailing safe.

This whole situation is ridiculous. No one who might be in a position to help seems to want to help.  Those who offer help can’t do anything. 

People have led me to believe access was available when it wasn’t. People haven’t understood what I need and then got annoyed when I corrected them. I’ve been asked three times in the space of one phone call “you cant stand on the scales?” I sent an email to somewhere that we think can help and their admin person replied that they had passed my query on to the relevant person. This is somewhere that request email is used if possible.  Three weeks later I chased it and got what boils down to “you know we’ve had your email, shut up and wait” in reply.

I don’t usually have “if I wasn’t disabled” on my radar. It’s not healthy and it’s not necessary, as a CPer life on wheels is all I’ve ever known. But there is no escaping the fact that I’m currently five weeks and counting into trying to find a way to do something that were I able-bodied could have been done in five minutes or less. And I don’t know when it will be resolved.  

It’s Not Disablism (But Really It Is)

Today is Blogging Against Disablism Day (BADD). I’ve taken part since the beginning which I think was 2005. And I’ve written all sorts of things about different aspects of being disabled, different experiences I’ve had. Even a poem.

I don’t have anything major to say today.  I don’t feel like I’ve experienced any real disablism for the last few weeks.

If you asked my friend Angela she’d tell you different. She’d say I should write about a couple of weeks ago and people I know relatively well assuming I would do something and completely ignoring that several months before I’d said maybe and what I’d said to them about reasonable adjustments I’d need and the level of effort it would take for me to travel to the middle of nowhere village where that would take place.  She was annoyed on my behalf when I told her what had happened. The whole thing did really piss me off but it’s mostly resolved now.

If I asked my journalism tutor, Sarah, she’d probably suggest I should write about the lift at London Waterloo down into the tube station being broken when I went in March. She was horrified when I told her about my having to use a goods lift that was usually used to move food. And more so that it was still broken when I went back more than 24 hours later. The words “you are not freight, goods inward or food” were used when she was talking to me about it.  I find it hard to get worked up about the odd occasionally broken lift (ones that are long term broken are a different matter) but the level of faff involved in sorting that was ridiculous. Because nobody knew when I went back that it was still broken.

A friend and I were stopped when we were in London by someone random woman who wanted to tell us about god and how we wouldn’t be disabled if we believed. She told me that god loves me and she loves me. I told her she doesn’t know me and I am, in fact, quite a bitch. That might be the story my friend would suggest I wrote if I asked her. And is reason number 743 why I’m an atheist.

Mum and I are going to visit an Andy Warhol exhibition in Oxford tomorrow. If I asked her about disability experiences the difficulties in finding out how I get the free carer ticket the website promised I could have might be her suggestion. I booked my ticket but no where did it say how to book for a carer and email went unanswered. Twitter, eventually, came to the rescue but the promised response on there took longer than it might have.

All of those things (and many more) are niggles that I face on a daily or weekly basis because of my disability.  Many of them are outright disablism.

But I don’t often think of them that way.  Because they’re just my normal. Little things that have become expected and “just how things are.” and worn me down until I can’t acknowledge the shock and frustration they bring until a friend or family member does. It’s just not on my radar.

Third Time Lucky?

There are many things I could write about for BADD this year.  Incidents from this week included as well as things from a while ago and just general observations.

I could tell you about being screamed at in the middle of mcdonalds for taking too long in the disabled toilet.

I could tell you about the person who called my parents when she couldn’t get me on the phone (I was at CAB and apparently the call was too urgent to wait)

Those are my two things from this week.  But mostly I’m thinking about tomorrow.

I am – hopefully – going to see Dirty Dancing with my friend Rachel who I was at uni with.  I know that Rach is looking forward to it.  I’d say I’m looking forward to it but that would be a lie.  I’m looking forward to seeing Rach.  To lunch at Pizza Express and a catch up.

But I’m looking at the emails we’ve been sending sharing train times and plans and seeing the “We’ll have the time of our lives” she’s signed a couple of emails off with.  And it makes me smile.  But I also wonder if we actually will.  Will we get there?  Or will it be yet another shitty experience of disablism from a theatre?

Because this will be my third attempt to see Dirty Dancing.

I was supposed to go see it in December in the theatre in Oxford.  For my birthday. The whole sorry story was blogged about in my blog post from January titled “Attitude is Everything” with a little bit of a funny follow up in another post titled “I believe

Basically the lift in the theatre broke, they were appalling at getting it sorted and kept implying it was my decision not to see the show when I refused to use their alternate access for genuine fear of being killed by it.  It was the most ridiculous thing and the worst incidence of disablism I’ve experienced in a very long time – not least because it was somewhere I’ve enjoyed going for years and previously had very good times at and good access/inclusion experiences.  Those previous experiences made it worse because they were so unexpected.

And it ruined my birthday.

That lift was then fixed only to break again on the day we should have made a second attempt at seeing it. And more ridiculouslessness ensued.

I’ve been joking with people that this time it’ll be fine – after all Birmingham Hippodrome has two lifts!

But it’s the evening before my third attempt and I find myself worrying that maybe it won’t.

I can accept that my experiences with the theatre in Oxford mean I can’t go to musicals as often any more because I don’t feel safe going there now.  But if the same were to happen with Birmingham not as often would become basically never and that would be very upsetting.

It’s probably a ridiculous and unnecessary worry.  But it’s the scar that disablism has left behind.

Signal Boost: Blogging Against Disablism Day 2015

Blogging Against Disablism Day, May 1st 2015 I suspect most people who read this will already be aware that 1st May is Blogging Against Disablism Day (BADD) as it has been every year since 2006.  But I wanted to post a reminder here just in case.

That’s this coming Friday

BADD is an opportunity for both disabled and non disabled people to blog and share about disability discrimination (otherwise known as ableism or disablism) – what they think, what they’ve experienced and even any successes (which for once it’s looking like I might be able to share at some point soon although probably not in time for BADD).  BADD has proved a very popular event over the years it’s been running and people participate from all over the world.

It gives a brilliant sense of community and helps to realise that you aren’t alone.  I don’t often feel like that but there are times now and then when I forget that others have experienced what I have and know what it’s like.

I’d really encourage everyone who reads this to either participate themselves or if not a blogger to at least read some of the posts people write on 1st May.

As always, The Goldfish is hosting and you can find the BADD hub over on her blog. They are also on twitter as @BADDtweets and there is a facebook page too

I’ve taken part in BADD every year since it started and my posts for it can be found here

Not such an equal “ism” #BADD2014

There is a project called Everyday Sexism.  It was started by a journalist on twitter.  It describes itself as

Documenting experiences of sexism,harassment and assault to show how bad the problem is & create solidarity.

I know of it through twitter (there account is @everydaysexism and the hashtag is #EverydaySexism) but they also have a website.  It’s had quite a lot of attention online and in the media and a lot of people are participating in it. The tweets on the hashtag are an interesting mix between the harrowing, the role your eyes and nod your head in frustrated recognition and a nice smattering of friendly support and community in a way that only twitter can do.  In short it feels like a brilliant project.  It’s not one I’ve participated in.  I have, as a woman, obviously experienced some sexism in my life.  But it feels to me as though ableism is a much bigger problem for me.  Because the comments I get about “needing someone to take care of me” don’t relate to my gender but to my wheels. Apparently my wheels are a more of a target for abuse and hate than the fact I own a pair of boobs.

Just in the last week I was asked by someone who knows me and my Dad where my dad was and when I said “he didn’t give me a lift this week” they demanded to know who was looking after me. Now they could have said “how come he didn’t bring you this week?” because he often does give me a lift or “oh so how did you get here?” but know I, obviously, needed to have someone looking after me and they had to know who it was. I’ve got both boobs and wheels I’m clearly helpless. Actually screw it as a wheelie the fact I’ve got boobs is probably irrelevant. I replied “I’m looking after myself. If you meant who gave me a lift then so and so did but she’s gone off to something else”  They didn’t seem to know how to respond.


A couple of weeks ago I was in a book shop and I spotted that there is now an Everyday Sexism book.  And that’s amazing.  The project deserves to be shared and a book like that can only help impact and bring change and share the project even further.  That needs to be celebrated.  And although I’ve not read the book, it’s one I’m very keen to.

There are several spin offs from the everyday sexism project.  One I’m following is Everyday Ableism (@everydayableism  and #everydayableism).  Again a good project and good discussions.  But not so much support from the press and hype about it.  Or at least not that I’ve heard.

I’m glad that my “ism” if you will – ableism – is getting more attention and talked about more.  I’m glad that it’s being thought and that things are improving.  But as I sat in Foyles looking at Everyday Sexism the book I couldn’t help but get a little sad.  Because no one’s going to take Everyday Ableism that seriously.  It’s not as important or as equal.

But it’s just as bloody painful.


BADD 2014 will be Thursday 1st May 2014

It’s nearly 1st May!  And if you’ve been around my blog (or many other disability blogs) in the years dating back to 2006 you might know that in the disability blogging world 1st May is also known as Blogging Against Disablism Day or BADD.

BADD is run by The Goldfish – you can see this year’s launch post here.

She describes it as

  This is the day where all around the world, disabled and non-disabled people blog about their experiences, observations and thoughts about disability discrimination (known as disablism or ableism). In this way, we hope to raise awareness of inequality, promote equality and celebrate the progress we’ve made.

Blogging Against Disablism Day is not a carnival of previously published material. The point about doing this around one day (or there abouts) is that it is a communal effort and all the posts connect to one another. You can of course use your own post to promote other things you’ve written in the past as you wish.

On the day there will be a master post over on Diary of a Goldfish linking back to all the contributions to BADD (I was going to say BADD posts but that could be misconstrued!). They will also be on twitter – @BADDtweets – and facebook.

I’ve taken part every year since it’s inception and will be taking part again this year.  This link will take you to all of the posts I’ve written for Blogging Against Disablism Day.  They’ll be a new post on Thursday in that collection.  I’m not sure what form this years post will take or what I’ll write about but I would like if at all possible to write something more positive than I have in the last year or two.  But I’m not convinced that will be possible because I’m really not feeling too positive right now.


I had been saving my Can You Actually Hear Yourself? Post to write about for BADD but I decided against it and wrote it last week instead.  In part because it was really bugging me and I wanted to get it out.  And because I figured there would be something else to write about between then and now.  I hoped there wouldn’t be but I thought there probably was.  And at the moment there is already one small thing I could write about.  Nothing major and I hope nothing major will come.  But I doubt it.

I really, really do.


I’m bored.
I’m bored of being seen only as the one in the wheelchair.
I’m bored of my disability being all people remember about me
I’m bored of being defined by my CP.
I’m bored of complete strangers demanding to know how long I’ve been in a wheelchair
Of them asking “what happened?” And then when that doesn’t get the answer they want demanding to know “what’s wrong with you?
I’m bored of fighting.
Of having my concerns ignored
Of asking for something and having it decided for me that something else will do.
I’m bored of saying that I need something and explaining why. Then having that explanation ignored because they know better and my anxiety diagnosis cited as the reason instead.
I’m bored of asking about access because I’m worried and being told I need to have more trust.
I’m bored of broken promises
People forgetting
Not thinking
I’m bored of going round the back
By the bins
Of waiting
Of sitting hoping while staff hunt for lost keys
I’m bored of being a scrounger
I’m bored of being seen as a deserving case
Whilst others fight.
I’m bored of being lesser.
But then
I wouldn’t want to be anything more
Than what
I am
Because I’m me
But most of all
I’m bored of that
not being
What people see.

this post is meant to highlight some of the difficulties I face as a disabled person, there relentlessness and how it can make me feel. It’s my submission for Blogging Against Disablism Day 2013

I don’t wanna fight no more

I wanted to write a detailed and punchy post for this years Blogging Against Disablism Day, I really did. Or I was going to blog about some really funny inadvertently disablist comments a friend made. I killed myself laughing.

when it came down to it this morning I just couldn’t get motivated to do so. BADD is great for raising awareness but I no longer believe it can do great things as I once did. This evening I feel even less motivated.

In part that’s because I had one of those evenings where it all go wrong. If I’m honest it was pretty spectacular and at times amusing (only my mother could come round because my a pipe has come off my washing machine flooding my whole flat and end up totally destroying the washing machine in her attempts to fix it).

The other part of my being so meh about BADD has to do with two ongoing access fails I’m dealing with.

The first is finally showing glimmers of being taken seriously so I won’t mention.

The second means that the mainline train station I live by is no longer fully accessible to me. The ramps onto most of the trains are now too steep or my chair.

Tomorrow I’m going to London, a trip I was looking forward to. It would take 40 minutes on the train and I would get the 9.29 train most likely to give me time to get across London. I’d have to get a taxi as there’s no tube access at Paddington but the assisted travel staff member would help with that. And my travel expenses are being covered by the event I’m going to so for once the cost doesn’t put me off.

Instead I can’t get the train. The train company is paying for a taxi (after multiple emails and a meeting with a higher up I was told this is the only solution). In order to get me to Paddington at the same time the 9,29 train would get me in the I have to leave my house at 7.45 so the taxi can pick me up at 8 from the station. I suspect we will go straight past my house on the way to London but this taxi has to be from station to station. So I have to go to Paddington and change to another taxi. Without anyone to help me. I’ve never travelled across London alone before. Doing so with friends has shown me its not easy.

Then there’s coming home. They believe they can get me on the train. I bloody hope so.

My first thought was this is too much effort. I’m tired of everything being a fight and I just wouldn’t go. To quote the Westlife song

I don’t wanna fight no more
I forgot what we were fighting for,

But this is me. So, somehow, I’ve talked myself into it. And I’m going. Worried. A little bit scared. Frustrated. But most of all fed up. After 30 years – my entire life – of fighting for what everyone else gets without a thought I don’t wanna fight no more.

And yet

I must.

>The Fight Never Ends – #BADD2011

>Today is Blogging Against Disablism Day (BADD).  BADD started in 2006 I believe making this the 6th BADD.  When it was first set up I was a campaigner and an advocate but not as much as I am now.  I was really excited by the prospect of this day when we could all come together and work towards a common goal – the fight against disablism.

6 years later? Not so much.

Days like BADD and other events like One Month Before Heartbreak are wonderful at raising awareness.  And they take a lot of work to organise so I have big respect for The Goldfish from that point of view – I would rerun OMBH but I’d really rather not!  The downside of such events however is the fact that once they’re over the attention can fade.  No one can fight all the time and no one can pay attention to fights that continue endlessly.  Personally I am suffering somewhat from “campaign” burnout at the moment.  In a way I’d really rather ignore BADD this year but I know that I’d feel guilty if I did that.  But I’d like to ask everyone reading this to remember that whilst BADD is a once a year thing, disablism isn’t and so the fight against it never ends.  If you take nothing else away from this entry, please remember that.

Disablism happens every single day.  If not to me then to someone out there.  I can’t remember the last day I visited twitter and didn’t see at least one mention of it.  Maybe not by name but implied in the description of what happened, the hurt feelings, the abuse or the pain.

There are a lot of things which happen to me which I don’t consider disablism because they are my disability normal.  Some of them I deliberately choose not to blog about because in the grand scheme of things it’s not a big deal and it’s easier to move on.  But then I find that if I do tell friends about them, just mention it in passing sort of thing they can be surprised by what my life is really like and think things are terrible when to me they aren’t.  That’s absolutely ridiculous isn’t it?  The struggles of life with a disability, of disablism blatant or accidental are so normal to me that unless it’s huge I don’t always register it.  Truth is however I can’t go along thinking and focussing on the negatives in life and how terrible things are because I’m already on antidepressants and I’d need a whole lot more if I did that.  I can choose to wallow or I can choose to live life and fight despite my disability.  And I choose acceptance, a fight and lots of living.

Want to hear something else that’s totally ridiculous now I think of it?  I recently had a conversation with someone whose partner (an acquaintance of mine) had started using a wheelchair a couple of weeks before.  I think it was unexpected and by the sounds of things it’s not been very easy.  All of which I’m sure we can agree is totally understandable.  But as we were talking (this was just a brief chat) a couple of things they’d been finding difficult came up in conversation.  They were surprised by what those were.  I was surprised by their surprise.

That’s something that always happens when I talk to new or short term wheelies.  They talk about how outraged and shocked they are that they had to be lifted up a step into the cinema or the restaurant they’d been looking forward to going to didn’t have access when they got there.  And I sit there and think “welcome to my world” and their shock and surprise surprises me.  Because things like that are normal to me and if I’d not been somewhere before I’d check into it.  It’s rare that I can just head out the house and go somewhere new without some advance research and there’s always this little part of me that wonders at the fact that others don’t have to do that.

Disablism, problems with access and other disability related issues and obstacles no longer surprise me.  That’s gotten to be true to such an extent that when I went to the hairdressers (in a new premises) on Wednesday and they knew where their moveable ramp was, knew how to use it, it worked for me and there was no fuss whatsoever I was surprised.  (and so was my (nondisabled) Mum when I told her – she commented they must have been practising as they knew I was coming).  But the fact that’s the case? It’s totally ridiculous.  The fact that I talk to new wheelies about issues and the fire they still have surprises me?  Even more so.

But that’s what life is like for me.  It’s what life has been like for me.  Disablism, disability etc have all been a part of my life.  They will all continue to be a part of life for me as long as I live.  I hope however that as the years go by it will be much much less.  But must of all I have a hope for all the new wheelies and other disabled people out there.  Those who today have had accidents, or strokes.  The small children with CP just learning about their wheelchairs.  I hope that they never find disablism becomes “normal” to them.  I hope they never become as bitter as I am at times about it.  Because that, to me, is why we have events like BADD.  It’s why I am, and always will be, a fighter.  However reluctantly at times.

>You’ve come a long way, baby

>Today is Blogging Against Disablism Day.  I’m not really sure what to write about today and I’ve been thinking about it a lot, on and off, all day.

The other night I was at an event and I got talking to an older lady.  It’s to do with a project we’re both working on and we’d said we were both interested in doing a certain part of it.  There were people from all over this area there but it turns out she lives in the same town as me.  In fact I don’t think she’s too far from me although she’s not right on my doorstep and I’m not 100% sure exactly where she is.

So we were chatting a bit and she asked how far I get around in my powerchair.  I said about going all round town and going on the train in it to Reading, Oxford, Birmingham etc.  Her surprise at that was obvious – it seems she thought I’d be stuck pretty close to home (although she didn’t say so in as many words) and she said I’d have to come up to her for a cup of tea.

My first thought about that was that chances are due to access it’s not going to happen (old houses where she is I think).  Then I was I wondered a bit that she had seemed surprised that I get out so much.  I didn’t get a chance to think about it too much because the problems with the taxi then occurred.  (Off topic update on that, I complained and have heard back they are taking it very seriously and will speak with the driver.)

But it’s a long time since anyone’s been surprised by the fact I go places.  In fact, I’m not sure I remember that happening before.  It problem has but not in recent memory.  I get surprise about living alone, about sailing and other things that I get up to.  Sometimes people tell me that the going off on trains thing is big to them.  Not something like going out of the house and getting around in my own town.  It’s a little thing to me, it really is.

I tell everyone that I do these things “with a disability” because I don’t exactly have a choice in the matter.  It comes down to the fact that I want to do these things and to do them I have to do them that way.  The choice is do it or don’t do it.  Nothing more than that.  And it usually ends up being more than worth it.  Not always, but often enough to keep me happy and keep me trying.  I didn’t tell this lady that because it was just an offhand comment she made which showed her surprise and then she was busy inviting me for tea.  It’s such a little thing though that I don’t think my usual spiel would have been used there.  Mostly because I was surprised by her surprise.

I probably would leave this entry here and have it as a bit of a gripe about people’s attitudes to disability.  Then I mentioned her surprise to my mum.

My mum and I get on really well but at times I think that she doesn’t quite get the fight against Disablism and Disphobia.  I get frustrated sometimes if she’s so OK about things that make me mad.  Then sometimes her different perspective makes me think about things differently and that’s ok.

So I told my mum about this lady being surprised that I get out and about in my powerchair (and in my manual too but we didn’t talk about that).  And she pointed out that when this lady was young probably a person like me would have lived in a home (institution).  They wouldn’t have had the opportunities that I’ve got and that will come to me in the future.

This lady’s point of view is shaped (as all of ours are) by what we experience when we are younger and growing up.  I know I can make assumptions based on things I thought I knew because to me they are “normal” and find them to be wrong.  It can be quite a hard thing to realise and sometimes it’s difficult to admit you’re wrong (I’m not trying to say that this lady in anyway needs to apologise to me or admit that).

The other thing that my Mum’s comment made me realise was how far we’ve come.  I can see how far things have come in my lifetime and the changes that have happened.  They’re huge.  But I never thought about looking further back before.  And that really changes things.  As well as making that tiny little bit of surprise make a lot more sense.

The only problem is, however, that I don’t think we’ve come anywhere near far enough.  And that’s why days like today are so important.