A new chair

I’m getting a new manual wheelchair provided by the NHS.

I had an assessment with a rehab engineer and an OT today.  There was some discussion and after a few minutes I said “So I am getting a new chair then?”

And the engineer who is someone I’ve seen in clinic before said “Emma, the only reason we’re letting you go home in that chair is because we don’t have anything here to lend you and we can’t send you home without a chair. If we had something else you’d be in it.”

They also got a new type of cushion out for me to try and the OT declared she didn’t want me taking my old cushion home so sent me with the trial one. That’s a Qbitus Q-Care Integra 2. I’m to ring her tomorrow and say if I want to keep using that or to have a new one the same as I had which was a Jay 2 Deep Contour. Currently undecided on that.

So I’m getting an Invacare Action 4 – this is next one up from the Action 3 I’ve had since 2009 but looks all but identical. The change is due to my weight. I will have new lateral supports and solid back, identical to what I have on this (Jay J3 backrest). Something was mentioned about a higher back but I lost track of what was decided. Slightly deeper seat and elevating leg rests in the hope that will help with both spasms and lymphoedema.  It’s coming in my preferred black.

I knew my chair was desperately showing it’s age but it was working. I had been relatively sure my cushion had had it.  But I really hadn’t expected them to be completely horrified by the state of things.  It’s been made very very clear by both of them that I need to be keeping in much better touch with the hospital based wheelchair team and that this replacement should have been done about a year ago. Although I did tell them that last summer I saw one of the mobile team for a repair and commented about a new one but he basically said budgets meant they didn’t get replaced until they couldn’t be repaired.  

I’m very excited for my new chair – they are marking the order as urgent but no one is sure if that will make a difference. Still hopefully by August I will have it.

“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.

Parody

I love music.  And I love parody songs. Sometimes I hear the parody songs first and then discover the ones they’re based on – because I rarely listen to the radio a lot of new songs seem to pass me by for a while lately.

At the moment I’m particularly enjoying this parody of All About That Bass by Meghan Trainor – All About That Change.  It’s especially cool because it’s a parody that Meghan Trainor sings herself (along with James Corden who I’ve never really seen much of).  Apt for this time of year and it made me laugh.

But if I’m honest the number one parody song is always going to be All About That Chair by Heather Schouten. I love it. And sometimes I struggle not to sing those lyrics when I hear the regular version.

Q is for…

Q is for Quickie Salsa M

My powerchair is a Quickie Salsa M so what else to write about for Q? I use it daily and pretty much if I leave the house I do so in my powerchair. It’s my independence and so much more than that it’s my freedom.


These pictures were taken on the day I got it and it’s no where near as clean looking and is a little battered, three years later. It is however very well loved and a brilliant tool. Despite having had to have many parts replaced and it needing more maintenance than I believe it should do I wouldn’t be without it.

One of the things that amused me a lot when I got this chair was how impressed so many people were by the tilt in space on it – my previous powerchair had it as well but somehow it seems none of them noticed until they saw me in what they knew was a new chair.


I nearly didn’t get the seat riser (seen in action in this photo) which looking back would have been a huge mistake.  Being able to lift my seat up to a higher level is amazing.  it’s not the luxury the guy who sold me my chair described it as at all.

Monday Music: All About That Chair

It’s ages since I did a Monday Music post.

I quite like Megan Trainor’s All About That Bass.  But if I am going to share a version of that song it’s not going to be that one.  Because you know I’m all about that disability bout that disability bout that disability (sorry I couldn’t resist).

A you tuber called Heather Schouten who uses a wheelchair has done a version called All About That Chair. And it’s incredible.

I can’t find a copy of the lyrics but this article in The Independent includes some of them. The article in my opinion borders on inspiration porn and probably sees things in the lyrics that aren’t there. But the song is awesome.

Obviously.

I was on the platform at the station in Oxford this evening.  We’d been to see a show (Shrek the Musical) and it had been a bit of a break neck race to get there after the show finished about 20 minutes late meaning we had approx 18 minutes to get out of the theatre, over to the station and on the train. And there wasn’t going to be a train for an hour after the one I’d booked on.  Also I’d forgotten to check how late Didcot station is staffed tonight so I thought if I had to get the next one it’d be ok but I wasn’t sure.

It was a definite argh stress moment and a very quick walk for my friend who was keeping pace with me. But we got there with a couple of minutes to spare and immediately spotted a staff member

I went over to him and said “I’m going to need the ramp please. I’ve got assistance booked to go to Didcot.”

He said whatever he said in reply I can’t remember exactly but along the lines of OK. And I think he mentioned the time of the train. The he grabs his radio to call over to his colleague.  My friend and I were right next to him and could hear the conversation.

“can you come over to platform 1 and get a ramp please?”

“what do you want a ramp for?”

“For a wheelchair. Obviously.”

We were amused by that and the look on his face. Then conversation with his colleague over he put his radio down and looking at us went “What did he think I wanted it for? BMX tricks?”

A few minutes later a train pulled out of the station and our slightly delayed train pulled in.  The colleague appeared and a ramp was produced and put down bridging the gap between platform and train.

Sadly it wasn’t used for BMX tricks or anything exciting like that. Just to let this wheelchair user board her train home after a night out with a friend at a good but not great musical and a crazy rush to the station.  Which is probably exciting enough at just before 10pm on  a Friday night. And anyway ramps are for wheelchairs.

Obviously.

On knowing other wheelchair users

Recently I was in a coffee shop waiting for a friend.  I’d gone a bit early to do some writing (which didn’t happen in the end) and as I was queuing for a drink a very vague acquaintance was in the queue in front of me.  They turned and said Hi.

I said hello and asked how they were and we chatted a bit.  Briefly but friendly, but not really involved.  I don’t know this person and I don’t think we have much in common so I guess that’s how that’s going to stay.

They then mentioned having seen someone we both know recently who for the purposes of this blog I’ll call Dan.  Dan had recently been in an a bit of an accident from what they were saying.

My acquaintance and I first met at a workshop that was facilitated by a guy called Dan.  So I was sure that was who they were talking about.  I haven’t seen Dan in maybe two months but some of what they were saying about wasn’t adding up.

Until I realised that the Dan they were talking about was obviously a wheelchair user.  And the Dan I thought they were talking about (mutual friend) isn’t a wheelchair user.

I don’t know this Dan who uses a wheelchair.  I know there is a guy called Dan who lives near me who uses a chair.  Because of a very vague connection like his mum lives near a good friend of mine and my friend has done the “nod smile and wave” thing a few times when we’ve been out and he’s wheeled past then turned to me and said “that’s Dan…”

Maybe it’s him and maybe it’s not but if it is I’m not sure I’ve ever spoken to him beyond saying hi if he does when I’m with my friends.  I don’t know anything about him.  He’s not my friend and really I don’t think I could call him an acquaintance either.  I don’t think he’d know me if you said “Emma” to him, or even if you said “Emma in the wheelchair.”

I’m sorry but it really winds me up that just because I’m in a wheelchair people assume I know someone else who is in a wheelchair let alone that I’m friends with them.

I have lots of friends.

Some have disabilities and use wheelchairs

Some have disabilities and don’t use wheelchairs

Some are nondisabled.

In pretty much all the cases of friends who are also disabled I have much more in common with them than the fact we both have a disability even if we originally met through a disability group or sailability or something else disability related.

I don’t automatically have to be best friends forever with someone else who spends their life on wheels.  And don’t fucking other me by assuming that I do.

In fact earlier this week I had a dealing with another wheelie and I thought “sooner I don’t have to deal with you any more the better” because they were horrible to someone I really care about.

All my acquaintance had to do was start this conversation with “so do you know Dan?” and it would have been completely different.  Because not only would they have known from the word go that I don’t know Dan (something I never mentioned because I didn’t want to prolong the conversation when it got to the nature both got our drinks stopping point) but I wouldn’t have been confused.

And hopefully I wouldn’t have been told the (luckily not very personal) details of the very bizarre sounding accident of this wheelchair user called Dan who I don’t know but may or may not be the one whose mum lives near my friend.  And who might not have wanted a complete stranger told about his wheelchair breaking accident.

I wouldn’t have done.

 

Love – Hate

I have a bit of a love-hate relationship with my powerchair.  I think I’ve eluded to that fact before but I’m not sure I’ve ever really blogged about it.

Before I went to uni I only used my manual chair when out of the house.  I could walk a very short distance and I wobbled around the house and fell over a lot.  I also lived with my parents and younger brother and sister.  When I went to uni I started using my chair “at home” more but still walked a bit with my walker.  That didn’t last too long.  In part because I was doing more and I can do more from my chair than from standing because I don’t exert so much energy on standing and trying to balance. And not needing to balance means I have my hands free for doing stuff like making a sandwich or whatever. The decision was hastened somewhat by the fact I was living with/spending a lot of time with a couple of other disabled people who would tease me and make cutting comments about the fact I was walking (looking back it was probably jealousy).

I lost a lot of my ability to walk as a result, can’t walk as far and find it more tiring because I’m out condition. Maybe I could get some of that strength back but it was never functional walking and what’s the point of being able to walk to the sink if I can’t brush my teeth when I’m there or walking to the washing machine only to be unable to load it? When I wheel there I can do those things. My balance will always be lacking and that’ll never happen.

And at uni I lived on campus.  I had support workers a lot of the time (all the time in the first two years) to help me get to places and the places I went weren’t on top of each other but equally weren’t literal miles apart. So if they weren’t around and I wanted to pick up my post, go to the computer room, get some milk etc I could do it with enough time.

In my last couple of years there I knew a lot of the security guards and maintenance people and sometimes if they saw me on their rounds they’d bump me over kerbs so I didn’t have to take the accessible but longer route or give me a shove up a hill. The guys in the nearby takeaway had steps but they carried me up them hundreds of times. If you had a parcel you had to collect it but the woman in charge of the post found someone to bring me mine.

I was so independent. I loved it and I swore blind I’d never get a powerchair.

Then  I left uni and circumstances meant I ended up living in the middle of nowhere for a year and a half.  There was no accessible public transport.  Hell, there were hardly dropped kerbs. If I wanted to go somewhere, anywhere and not pay a tenner each way I was gonna need that powerchair.

So in the space of a couple of days I went from “no way, no how, not ever.” to “I’ve just ordered my first powerchair and I’m waiting for it to come”

And it was the right decision.

I’ve said so many times that my manual chair gives me my independence but my powerchair gives me the freedom of the outside world. I have done so many things with it like going to the paralympics for days on end and visiting friends in Birmingham and simply just deciding yesterday that yes, I have already been to town today but do you know what I think I’ll go back and go to Sainsburys. And even with taxis and my manual I couldn’t have done those.  That’s where the love part of it comes in.

So many moments, so many memories. So much fun and such freedom all because of my batteries and my wheels.

But again, not doing as much in my manual means I’ve lost condition and I can’t do as much. It means that someones offered to give me a drop me somewhere I’m going in a few weeks. Powerchair accessible public transport is proving difficult and the offer of a lift is there.  And the hate part of this love hate relationship comes in.  Because I need my powerchair for the distances involved once I’m there I think. They don’t have a wheelchair accessible vehicle and neither do I, meaning I’d have to collapse my manual into the boot of thier car. So I  think about it then have to thank them and say it probably won’t work out. Which might mean I end up not going.

But I also know damn well that before I got my powerchair I’d have been able to do the distances involved. And even though it’s been practically ten years since the day I decided I’d get my first powerchair I blame myself and for those few minutes before rational sense returns I wish I’d never got the damn thing.  It gives me my freedom and I love it.  But sometimes it feels like it made me relient and I hate that.

Sometimes on the rare occasions I am out and about solo in my manual (which will usually be when I’m with someone but they’ve wandered off to the loo or the cash point or some such) people will coment that I should have a powerchair.  I’ve even had complete strangers stop me on the street and offer to fundraise to get me one.  It’s always amusing to see their face when you go “yeah, I’ve got one but I wanted to use my manual today”

For me having the powerchair isn’t the end of the story.  Because I mostly love it.  Apart from those rare times like tonight when it makes it harder and I have a little bit of hate for it.

 

Making a Difference

I was rereading some old blog entries earlier. I was planning to write something (not this post) and I thought maybe I’d written about it last year. I didn’t find anything but what I did come across was this post. I thought it was kind of apt given a piece of news I received today.

After three and a half months I finally received my new wheelchair cushion. It’s strange. It’s good and it’s comfy. But it almost feels off. This is set up differently to my old one and I’m not sure if that’s why (I have the stuff to change the set up to my old one if necessary), if its because it needs to learn how I sit or if it’s just because I spent the last two months with makeshift temporary cushions.

In the box with the cushion was a 20 page instruction booklet in 8 different languages. And an envelope with my name on it marked “private and confidential”

It was a letter. One with information about my cushion.

And then acknowledging the complaint I made to PALS about my five hour round trip to wheelchair services when they didn’t have my cushion in yet. They’re sorry but hope I did find some use in the appt (uh… Not so much).

Finally it said they’ve had a meeting with their administration team and put a system in place. One that will make sure what happened to me won’t happen again. I’m pleased. In fact I’m really pleased. If the system works and I truly have made a difference for other patients that’s huge.

But as I wrote in the entry I linked above for once I’d like not to be the one who is first and discovers a problem or the one who has it last and finds the solution. I’d like to be the one who came next.

Still, there’s always next time. Or the time after that. Failing that there’s also the time after that. Because god only knows the disability related fuck ups aren’t going to stop happening.

Maybe just once I’ll be the lucky one.

Someday.

Conditions of Loan

I’m going to start this entry with a Facebook status I posted on Friday. It’s the easiest way of cutting a very long story short.

Requested a new wheelchair cushion. Waited six weeks and got sent part of a wheelchair cushion. Took the old disintegrating one apart and tried to fit new part to still working bit of old cushion. They’re different sizes. Couldn’t put old cushion back together as taking the cover off caused the gel to completely disintegrate. Covered in gel as is my floor. Called wheelchair services. They promise to get me a full new cushion with inserts. Manage not to shout at the OT about maybe taking eight weeks to do so. — feeling Aggravated.

A couple of points here before I get to the point of this entry:
The wheelchair cushion I use is a Jay 2. Getting only part of it is possible because it’s made up of a base and then various bits which are used in different configurations. I have the base and three other bits.

The day before the mobile technician came out I had a letter from wheelchair services listing what they were issuing me and enclosing the conditions of loan. These are standard and refer to a wheelchair throughout.

Being a wheelchair services veteran I’m well versed in these conditions. They do make for interesting reading. Some highlights:

Give it back or give it in for repair if asked. Yeah ok, I can do that. But I’ll need a replacement if I give it back or a courtesy chair if it’s being repaired

Keep it clean. I’m not good at that. My wheelchairs are generally in need of some sort of clean. I should work on that. On the other hand I’d rather be out sailing and shopping and going places and have a battered, filthy chair than a pristine but hardly used chair because I’m not doing things.

Let them know if I no longer need it so they can reissue it to another user. Moot point for me and anyway the majority of my mobility equipment gets used until its dead and fit only for scrap and very possibly for spares.

Inspect for damage and report repairs. I do this to an extent. My clothes guards almost always have damage because they are flimsy plastic and a silly design that works well for what it does but doesn’t have the staying power it could do with for how i use my chair/transfer. Surface cracks are practically a design feature on my ones. It gets beyond that I get them changed. Both were changed less than two months ago. Both have been cracked or a week or two. It’s cosmetic so I’m leaving it.

The wheelchair is only to be used by you. Damn right it is. I absolutely cannot stand anyone else using my chair or even touching it. It’s part of my body, leave it alone.

Tell us if you emigrate/move/change your contact details. Yeah ok.

Tell us if you go abroad. I think on previous versions years ago this was “don’t take it abroad”. So this is progress. But oh no, no, no, no. I’m not going abroad anytime soon but if I was I wouldn’t do that.

A lot of this is common sense. But I think it misses the most important thing.

Use the equipment. Use it for what it’s designed for. If you’re feeling adventurous try something different. Something that maybe wheelchair services or the manufacturer would think it can’t do. Get out there. Live. Enjoy it. Be free in a way you couldn’t before you got the chair.