Fact: I don’t like people to touch my wheelchair without my permission.
And earlier today at swimming one of the idiotic people there was doing stuff she really shouldn’t do with someone elses wheelchair - sitting in it*. As soon as I saw it, I was mad and I was ranting to everyone “that better not be my wheelchair, all hells gonna break lose if that’s my wheelchair.” Thankfully we soon realised whose chair it was - not mine. The person whose chair it was wasn’t happy but wouldn’t go and say anything. The same person also moved my chair later on because she “thought it would be easier for me” and I made her move it back because it was easier where it was in the first place.
There were also a couple of other incidents earlier in the week when people did really frustrating and annoying things (and really wrong on one occasion). Not all directly involving me but all affecting me. And at least one made me want to go “is that not obvious that rah rah rah”
So I’d kind of reached the point in time where I was like “people in general are annoying, idiotic, rude and stupid” and just the less I had to do with people in general the better.
Then my carer came in. I’ve known her for about three and a half years and she’s gotten to be a good friend. We both had had annoying days and compared notes. I was ranting at her about all of this and especially about the whole don’t mess with the wheelchair thing. I said “you know I don’t like people to touch my wheelchair.”
She said “I can’t resist” and reached down and grabbed my chair and went “I touched the wheelchair!” Laughing i pushed her arm off. She did it again, ran away and yelled “I touched the wheelchair!!” again.
And feeling better I laughed harder.
*the reason why sitting in someone elses wheelchair is basically a no go in my opinion is this - my Quickie which is my main manual wheelchair cost me £1200+ five years ago when I got it. It is my legs and without it I can’t move. It’s also set precisely how I need it to be. I don’t want it messed with and broken and I know people who have had their wheelchairs broken by others sitting in them when they aren’t around and busting them. Obviously, given my size thats unlikely BUT. I also have a memory foam/gel cushion in my wheelchair. It moulds to how you sit and “remembers” If someone else sits on it it can get messed up so the number one rule I was told when I first got that sort of seating was “no one else sits on it.”
The next Disability Blog Carnival will be hosted later this week by Retired Waif. It’s theme is death/spirituality/end of life issues. Which is something I’ve been thinking about lately and so is an apt theme for me.
Margo, who writes over at Funky Mango’s Musings, is doing a PhD on physically disabled people’s attitudes to end of life issues. Or some such similar wording. And at the end of the month I’ll be traveling to Milton Keynes to meet her and take part in a focus group she’s running as a part of her research. I’m really looking forward to it for three four reasons.
I get to meet Margo
I think this is a really interesting topic
There is a very slim possibility that there will be shopping opportunities.
I get to leave this godforsaken place and go somewhere much more interesting for the day
I’ve been talking to a few different people about going to take part the focus group. Their reactions have for the most part surprised me.
Some other CAB people because I swopped days so I could go. One person wondered why a physically disabled person would have different views to an able-bodied person. She also suggested that someone like me who has been lifelong disabled is not a good person for the research because how would I know how being disabled affected my views. It’s an interesting point but I found the whole conversation frustrating because how could the views of disabled and able-bodied NOT be different?! I tried to explain but I don’t think she understood, I probably could have done a better job but I’m not sure it would have made a difference.
That was just a very brief conversation and wasn’t overally surprising to me. Different people have different opinions and levels of “getting it” when it comes to disability and that was sort of what I would expect from that person - someone who I don’t know particularly well and who I’ve never discussed disability, disability identity, and disability culture with.
My Mum also wondered why you would assume that the views of a disabled person would be different to an able-bodied person but as soon as I started explaining it she got it and got it properly. I do have to say that I had a harder time with her wondering than with the above person because if it can be so obvious to me but not to my own mother who has spent the 26 years of my life so far walking the disability path alongside me then just argh. But I actually think now it was more of a case of not thinking about it because as soon as I talked about it she got it. And I know how hard it can be to think on the fly so to speak - particularly about things that are so “big”.
Another CAB person on another day made the comment that she’s noticed that attitudes to end of life issues do vary between disabled and able-bodied people. Her comment was that everyone around her age is scared they will get Alzheimer’s - the inference there I think being that disabled people are less worried by such things and also it seemed to be implied that euthanasia is viewed differently by the different groups. The interesting thing here is that this is someone I know better - someone who has seen me struggling with access and all the other crap that can come with a disability. And also is the person who first mentioned Ashley X to me if only in passing.
I tend to agree with that opinion. As a friend who has ME and who has been in a wheelchair at least as long as I’ve know her (seven years) put it - we know that health isn’t everything. I might not go so far as saying that health isn’t everything because I’m not sure health really comes into my views. To me the whole thing comes down to the validity of disability as a way to live. Ugh, that’s a horrible sentence.
Anyways, what I was trying to say (I think) is that a lot of people, doctors and otherwise wonder how we can have our disabilities and be happy, how we can say that we love life, enjoy it etc when we spend our lives on wheels or with other “differences”. Which is why we end up with cases like Brent Martin, Ashley X and Katie Thorpe and even, god damn it, Terri Schiavo.
As long as my people are being treated and abused and even killed then my views on The Three D’s will always be different to those who don’t live this sort of life. They have to be. Because no one who isn’t disabled can understand how things are and why that sort of treatment is truly wrong.
Two final things:
I read Souvenir by Therese Fowler last week. It’s a story about love and life and it’s brilliant. But it’s also, inadvertantly it feels, a story of disability. The main character is dx with ALS part way through the book and struggles with the idea of suicide and euthanasia throughout the book once diagnosed. She is a doctors (the main character, Meg, I mean) and at one point comments that most doctors are in favour of euthanasia. It’s a brilliant, brilliant book and one I want to write more about here. But that’s a scary, scary thought.
and this is a great quote that I’ve shared here before but which seems apt for this entry and this carnival.
Not only do physically disabled people have experiences which are not available to the able-bodied, they are in a better position to transcend cultural mythologies about the body, because they cannot do things the able-bodied feel they must do in order to be happy, ‘normal,’ and sane….If disabled people were truly heard, an explosion of knowledge of the human body and psyche would take place.
~ Susan Wendell, author of The Rejected Body: Feminist Philosophical Reflections on Disability
Welcome to the 39th Disability Blog Carnival. In case we haven’t met before, I’m Emma. And our theme this week is “If I knew then…” I think we’ve got some great posts here and I hope you will enjoy it as much as I have putting it together. Please take the time to comment on some of the posts, it’s the only payment most bloggers get and it does mean a lot. Also, may I suggest taking the time to get to know some bloggers you’ve not met before beyond the post of theirs I’ve shared here (if that makes sense!). One of the things I love about hosting the carnival is going to new blogs and meeting new people.
Cheryl presents What I’ve known: a DBC post in which she talks about that age old problem of mobility and weight. Personally I seem to have the opposite problem to her in that I am very overweight and it does affect my mobility but the comments make it harder for me to do anything about it. But I’m like her in that I agree when she writes “The theme for the 39th DBC is “if I knew then…” Sometimes what you’ve known can be so much more damaging then what you didn’t. I’ve thought about my weight every single day for the last 7 years. That isn’t healthy.”
She also took the time back in January to answer 10 Questions. They are the sort of questions people ask a lot about disability and being disabled. And in one of them she considers what she’d have like to have known when she was 11. Again, reading that it really makes me think I must make the time to get to know Cheryl better.
“Crazy woman says ‘what’?” is a blog entry written by Liz. Liz is not a disability blogger but she discovered Blogging Against Disablism Day and here shares a conversation she had with her son and how a lesson she learned from BADD changed her views and influenced how she is teaching her son too. Welcome, Liz and thank you for taking the time to read and to learn. It makes me very happy to see that events like BADD really do make a difference.
So much of Twxee’s post had me nodding along in agreement. I could quote it all, but I will just share this small part and send you to River of Jordan to read the rest:
“I wish just one doctor or other “professional” would have told me that yes, your child may have some medical issues, but above anything else, he’s a KID.”
If Kristina had realised just what Charlie saw earlier she might have viewed that futon differently - A Special Find tells the story of value found where it wasn’t expected.
Living life with CP, I’ve learnt many lessons along the way. They have been good lessons, bad lessons, hurtful lessons, and best thing that ever happened to me lessons. I believe I learned them all at the time that was right for me to learn them. But there are one or two which I can’t help wishing had been a part of my life earlier than they were. When I was 13 I learned that CP was forever. And it wasn’t until I was 17 that I realised that CP is ok, it doesn’t matter. CP defines me it does not confine me to quote a long ago entry of Dave’s. I think that is a lesson which might be known as acceptance or possibly even learning to love yourself as you are. Because, truly CP or other disability isn’t a bad thing. Possibly I should note here that I think acceptance as a child is very different to acceptance as a teenager (possibly even as an adult) and different levels of that are required at different times. But that’s a whole nother entry. Anyways.
Heike has three kids, two of whom have CP. In Lesson from my Son she shares the story of when he realised that his CP doesn’t matter.
Letter To a Kid Like Me. Ettina shares what she wishes she had been told when she was younger. “Everyone is valuable, everyone has some good in them. No one’s perfect. Normal isn’t perfect, in fact you may have noticed normal has some problems with it.”
Come on People Just Leave Her Alone! Just because we have disabilities doesn’t mean we are helpless and need rescuing every five minutes. In that entry, a reference is made to this entry at Chewing The Fat. Another girl with a disability and another attempt at forcing unneccessary help. But a wonderful solution. And one that I’d love to try out myself. If only I had the nerve.
One thing I wonder sometimes (or often, it seems lately) is whether able-bodied people would have made different comments to us or about us or thought twice when offering help or even forcing it on us - if they had known just what we thought/feel about it and how we would react. Doesn’t She Know is a little bit off topic for this edition of the carnival and isn’t overtly about disability. But I like it and it’s my edition of the carnival. And, more importantly, it touches slightly, briefly, on that subject, the one that has filled my thoughts, plagued them almost, so much lately.
Dioskouroi. Love this entry and the comments say that the title is apt. I have no clue what it means though.
Laura Gilmour presents I Would Have Had to Miss the Dance posted at Touched By an Alien: Life as I Know It. This is an entry that makes me very, very happy as I too love that song (The Dance, Garth Brooks) and think the lyrics Laura quotes really do reflect well on disability. The full lyrics to the song are here.
What the hell, it’s a really cool song, one of my favourites in fact, lets have the video here too.
Thirteen is an evocative post about the author’s first days at the state school for the blind… and with a little bit of look back.
Finally we end with a post which has had me thinking of Frank Sinatra and his song My Way ever since I saw the title of it in my e-mail in box. Shiloh gives us Regrets: A Useless, Self-Defeating Passtime
“Regrets… I’ve had a few, but then again, too few to mention…”
The short version is this morning was stressful and blah.
The afternoon was full of a couple of unexpected moments of joy within the mundane.
And then I went out training with Elisa.
Both of those things took away from the stress and the annoyances and allowed me to leave them behind where they belong.
We walked for a while after we met and then we decided to walk in the direction of the pub and the few shops on the estate. Fine. My chair was making a bit of a strange noise as though something was catching but neither of us could see anything it was pretty much wheeling fine (I’d wheeled through a huge thing of water right before it started doing that and after a while it stopped and wheeled as it should so I figure it was just the wet). Elisa uses her manual chair a lot more than I use mine and I was slightly babying my chair because of the weirdness so she was a way ahead of me but not far.
This woman came up behind and asked me if I wanted her to help me and I said “No, thank you, I’m fine. I’m trying to get fit.”
She laughed at that.
The most annoying laugh ever.
And she made some random comment before walking off.
I caught up to where Elisa was waiting outside the pub and we decided a cold drink and splitting a bowl of chips in the pub would go down just nicely so we did and we chatted. Then I wheeled myself home. It was tiring given that it was pretty hot but it was really fun and relaxing in a way too.
I can’t really describe how the incident with the laughing made me feel. I suspect she was probably just embarrassed or didn’t know how to deal with my turning her down. But it was tough to deal with. I would never laugh at anyone telling me they wanted to get fit be they a TAB or a PWD. Yet she laughed at me. My wanting to get fit is just as valid as anyone else’s.
Elisa hasn’t always been disabled just for the last three years or so I think. We’ve known each other roughly two years so that must be about right. She commented when we were in the pub that before she became disabled she never realised how much of an effect other people and their random comments etc can have on you.
And I don’t know if she’s right or not, having always been a PWD it’s an experience that is alien to me. So maybe that woman didn’t realise the affect she would have on me.
I’ve been writing things to post on here and deleting them and writing and deleting and writing and deleting on and off all evening.
Ever since I upset several people with a post some weeks ago and then deleted it at my mum’s request there have been several things I would have written about or could have written about here and I haven’t. I guess I’m worried about upsetting people again. And there having been things I have posted here which hasn’t had all the details it would previously have had.
Then today I managed to if not upset than definitely shock and distress several people in a face to face situation. Neither time did I realise that would happen. The first time, with my blogging, I will readily admit that I was in the wrong. I (perhaps wrongly) don’t think the whole of the blame lies with me but I definitely played a huge part in causing hurt. Today, however, all I did was express my opinion and have it be very different to the “norm” opinion that everyone else had based on the same thing. I don’t think I’m wrong this time but knowing that others think I am is tough.
This is my entry and attempt at claiming some of it back. No more bad juju for me (I hope!)
We were sat having a drink and someone came over and said “you see over there? that’s so and so and she’s new, she has blah blah blah (personal family info) and then this happened and she became disabled.”
And on hearing it other than thinking that the person telling us probably shouldn’t have been I thought “oooh. that must have been tough and it could have been sooooo nasty.” With everyone else, however, it seemed to be a case of stop all the clocks, get out the black banners and mourning clothes, we better throw the girl a pity party.
As a life long disabled person i don’t know what it’s like to wake up one morning and suddenly have switched from TAB to PWD, I imagine it’s probably as scary as the very idea that I might wake up tomorrow and find the same has happened in reverse to me. Equally i don’t know what it’s like to be planning a joyous thing and then have things happen whcih could turn it into your worst nightmare (not referring to disability here). The first is something I can never know, the second something I hope I never know.
But what I do know is that pity doesn’t help. In my opinion, pity makes it worse.
So everyone else sat there and muttered things about her being too young for that to happen (I was the youngest by probably 30 years in that group of friends) and how scary it must have been and blah blah blah how sorry they felt etc.
I, of course, stuck my foot in it to a certain extent with my comment that actually I didn’t feel sorry for her, I didn’t see the point. I said I agreed that it was one of those suck your breath in slightly “oh god” situations but that I thought she was lucky because she could have had it much worse as a result (or she could have died.) What \I didn’t get the chance to share/say is the fact that acceptance and moving on help a lot in a friendship or support situation. Get to know her/me/whoever as a person and ignore the disability. It shapes it does not confine and it only in some ways defines.
Obviously, I would never go up to anyone and say “hey that medical situation you found yourself in must have been really scary you lucky, lucky, thing, you.”
But how I wished in that group of supposed disabled people (most of them are older generation who’ve had strokes or aging related disabilities) I’d had my people there who got that you know what, disability isn’t a bad thing. And how I wished so called professionals who have done disability awareness training didn’t feel the need to share confidential information and identify us by our disabilities. Because saying something like “that’s Em with CP over there” really sucks.
I don’t like feeling like I’m in the wrong. I’m not in the wrong here (I think)
And I like it even less so when I actually am in the wrong.
Today is Blogging Against Disablism Day. And it’s actually really tough for me to write about those issues today.
Disablism is something I face on a (too) regular basis. It sucks. Seriously. But today, for once, I got to be in the majority - I spent the day up at the NEC at a disability information and equipment show called Naidex. It really really rocks. I will write a seperate entry about it as I don’t want to mess it up.
I will just say this - being there is like being among “my people” and it’s brilliant. Leaving it all behind was tough but I did it with fond memories in my heart and a smile on my face. I still have that smile now. I hope I can keep it forever.
Unfortunately, we can’t all live our lives in a disability normal environment and I have to make do with this one day every few years. My smile won’t last forever. But I pray that one day someone like me will never have to have the bad that goes along with the good. Sure you can’t have all good, it doesn’t work like that. But some of the bad? It’s really, really bad.
I don’t want to spoil today with memories and the bad times so I will just share some links to my older posts.
Also, I didn’t write this post but I read it yesterday and it really struck me as relevant. Ashley Kate is a two year old who has had a lot of medical problems and has spent a lot of time in hospital. Her parents keep a blog for her and yesterday Trish posted a conversation she had with Ash’s older sister. I don’t think she knows about BADD but I just wanted to link that post here because it is so *right* for what we are trying to do - Conversations with Allie
The next Disability Blog Carnival will be hosted by Stacey AKA Miss Crip Chick. She’s given the theme Disability Culture and Identity and has posted a great list of ideas and prompts. Thats on Thurs 8th with submissions due on/by Mon 4th.
BADD (Blogging Against Disablism Day) is back for it’s third go round on this Thursday, 1st May. As usual, the wonderful Goldfish is hosting. I can’t wait to take part although whether I will manage to actually post on Thursday is currently questionable.
Dave is starting an online book club with books of a disability theme/culture. The first one looks great and will be discussed on Thurs 22nd May (another day when I might not be online, damn it). It’s called A Thread of Grace
22 year old PWD, he had a mental age of 18 months. Or so reports the news stories. James and his mother went missing on Friday. Her body was found earlier this week and his body was found yesterday. Two men have been arrested on suspicion of murdering James.
It’s a news headline on Yahoo! this morning. And they were reporting it on our local radio news bulletins this morning too. I haven’t seen any of the papers yet today. I’m glad (that’s the wrong word but it’s all I can think of) that if such a tradegy had to occur at least it seems to be getting some coverage. But obviously, it sickens me that crimes such as these occur.
Here’s one of the many online stories I have read (from Yahoo!):
A body discovered on Wednesday is that of a missing disabled man whose mother was found hanged earlier this week.
West Mercia Police said officers would need to study dental records in order to formally identify the remains of James Hughes.
A man and a youth arrested on suspicion of murder late on Wednesday remain in custody at Redditch and Kidderminster police stations. The suspects’ ages have not been released and officers have also refused to say whether they were known to James.
A spokesman for the force said it was believed that the body, found at the family home in Redditch, Worcestershire, was that of the 22-year-old.
James and his mother, Heather Wardle, were reported missing last Saturday, a day after the 39-year-old mother-of-four left home, saying she was going to visit a friend.
Formal identification of James’ body is expected to take some time, the police spokesman added.
Superintendent Jane Horwood added: “The post-mortem should give us more information about how and when James died.
“What started out as a missing persons inquiry has tragically become an investigation into two deaths.
“While we never gave up hope of finding both Heather and James alive, we were extremely concerned about both of them right from the start, and our fears for James obviously increased after the discovery of his mother’s body.
“This is without doubt one of the saddest cases West Mercia Constabulary has dealt with and the events of the last few days have left residents of Church Hill and the wider Redditch community shocked.”#
I will be following the developments here closely.
The majority of this post was written back in December when the incident mentioned happened and has been sitting in my drafts folder until I finished it this evening. Apologies if this doesn’t flow properly as a result.
Cripple This term is from old English, meaning to creep or to be inferior. It has so many negative connotations that you will rarely hear it used. It is also associated with mawkish sentimentality about “poor crippled children”. Don’t be surprised if you hear the term cripples or crips being used by a group of (mainly younger) disabled people, it is part of taking back offensive terms.
The above is a quote from a CAB training document on language and disability I read a while back. The emphasis, however, is mine.
Reading that was a huge moment for me. It really pleased me and made me think “yes!”.
The idea of taking back language is important to me. Taking back language simply means using the words which are meant to hurt us and stopping the hurt - owning the language because if you use it yourself it can’t hurt you. Words only become negative when people use them to hurt and to cause pain - which is something they do deliberate and because they want to hurt (or in some cases due to fear of what they don’t understand). If I use them so they become positive they no longer hurt me.
I’ve been trying to find a definition or page on the idea of taking back language but haven’t found anything that’s exactly what I wanted. The closest I could find was this page. But it’s not what I want, it’s not what I need.
Here is a quote from that page. It’s another one that really made me go “Yes!”
I guess I’m so tired of listening to all of our bickering on what name should define us. In the end I always want to shout, “OK, we are all different. Let us get on with it!” I know, this is really simplistic. And easy for me to demand that we just all agree on one term, transform this one term into a source of pride, and move on. I see the emerging disability culture and movement as very similar to the civil rights movement. The word ‘Black’ became acceptable when it was used as a word of beauty and power. I think the same can be done with the word ‘Disability’. And it will stop being negative, and become a word of power and beauty if we all agree to use it- together.
~Dana Mithaug
Back in December, for various reasons which had all of us whispering “this is so wrong…” and made me giggle rather a lot (but which I suspect would get me lynched by the disability community as a whole if I shared them here) we stuck Geri (my brother’s long standing girlfriend) in one of my spare wheelchairs and took her around Oxford and to the theatre in it. She stayed in it almost all evening.
She’d never used a wheelchair before and she didn’t know how to push it… so Soph got that job (mum was helping me). I also suspect that I am the first wheelchair user she’s properly known but who actually knows? not me.
On the way home one of Geri’s comments was “no offense Emma but I didn’t realise how hard it is to be in a wheelchair, it was uncomfortable, I couldn’t move.” or words to that affect.
It should also be noted that she got to experience what happens when the wheelchair platform lift breaks with you on it… and how they get you out of the theatre when the lift is broken. And she also got to experience a good friend coming up to her and being all concerned what’s wrong why the chair sort of thing… and being called a bitch by the friend when she did find out why the chair (because my wheelchair using friend who should have come with us was sick and we couldn’t change it but didn’t want to waste the ticket so told Geri should could come if she played the part of fake a crip).
The staff members who helped us get out commented that they could tell I’d been before because everyone else asked loads of questions about the ramp they put down to push us up the stairs and looked scared and complained about how ridiculous it was. My only question was “are you sure you can’t get the fire brigade to carry me up?” and to try to convince the girl of the merits of fit firemen coming. They laughed and said no I said “lets get on with it.” “you’ve done this before” she says.
The whole evening for me just made me want to stop and go “Yes!” Because they didn’t get it properly. But they got it a lot more than they had before. And that makes me truly happy. It is hard to be in a wheelchair. And you can’t just get up and walk away. But equally it’s not hard. Because it’s all I’ve ever known. However it did me good for Geri and others to see the truth to it - that it is no big deal but that its not always easy.
It was sort of hard for me to hear her say that being in the chair wasn’t easy. And part of me was like “why is she stating the bleeding obvious?!” But it was also truly empowering.
