Pros and Cons

Hi Everyone,

Only me again, I’m afraid. Hope you’re all doing well.

So, I was using a pretty unsuitable disabled toilet the other day and thought “I must blog about this, I want to know the annoyances other wheelchair users have”.

Basically, I’ve been in ‘accessible’ toilets that I can’t even shut the door of if I’m in my electric wheelchair and have a rucksack on the back (which I often do if I’m going away for the weekend). Then there are the toilets where I can’t reach the toilet paper…Who designs these?! Do they consult a wheelchair user to do a test run and make alterations as necessary (i.e. put the toilet paper holder somewhere easy to reach or make sure there’s enough room for an electric wheelchair)? I doubt it. Maybe I should contact someone who builds disabled toilets to try and find out. That’s one to add to the ‘to-do list’.

Then, I thought: “the point of your blog is positivity and saying being a wheelchair user isn’t all bad. You can’t write a blog where you spend the whole piece complaining”. I’ve therefore decided to highlight some positive experiences I’ve had (that are likely to have only occurred because of my chair) as well as the bad.

One positive occurred to me as I was experiencing it. I was travelling to Bristol for work last week and I got to my connecting train in Birmingham and there was another wheelchair user waiting to get on the same train. I was helped onto the first class carriage for no extra charge (because two wheelchairs couldn’t fit in standard). I therefore enjoyed free coffee, cake, biscuits and crisps on my journey. The First Class host was also lovely and we chatted about the importance of reducing stigma around Mental Health Issues (and you know my passion about that…it was a good day).

Gigs

My close friends and family will tell you that my favourite thing to do in my spare time is to go to gigs. I’ve been to so, so many. One of the reasons is because usually, I effectively get 241 tickets because the person who goes with me is my carer (I prefer the term ‘assistant’). I couldn’t afford to go to as many gigs if I have to buy two tickets at full price. So that’s probably my favourite pro of having wheels. However, you can only get 241 tickets if you are sat in wheelchair spaces. Does that make sense? What about people with learning difficulties who may need just as much help when attending a gig as those of us with a physical disability but don’t need/want to sit in a wheelchair space? What about those of us with physical issues who can transfer so if the wheelchair area is sold out we could sit in a ‘normal’ seat but would have to pay full price for two tickets. I understand that it must have to stop somewhere and you would undoubtedly get people trying to ‘push it’, but you often have to take proof of your disability, (i.e. a Disability Living Allowance (PIP) letter) to the venue before they let you have the tickets for the show. This would cut down on the amount of people trying it on when trying to get 241 tickets, surely?

 

On the subject of gigs, the only way wheelchair users can purchase tickets is to phone up the ticket seller. This is a premium rate number and when the artist is really popular there is a long wait (90mins has been the longest I’ve waited. For Michael Jackson, no less. Managed to get tickets then he died before the shows. I’m still not over it).

  1. A) the hold music is REALLY annoying
  2. B) The automated message keeps saying “you can also book tickets by visiting our website” (erm, no I can’t, do you think I’d have spent this long on hold if I could?!)
  3. C) My phone bill has been extortionate on many occasions (because I’ve had to phone on my mobile on my way to work). And sometimes I have not even been able to speak to a person in all the time I’ve been on the line.

 

Travel

It’s super difficult to be spontaneous as a wheelchair user. I often travel on trains to see friends and/or go to work. However, trains are not at all automatically accessible for wheelchair users. To board a train, we need train station staff to be available with a manual ramp so that we can get on a train. Obviously, stations are very busy, so they ask or AT LEAST 24hours notice before you intend to travel. This involves phoning up to book assistance. What if I just wake up one morning and decide I fancy a train trip to London? Well, most staff are very helpful and will try to help. It’s usually OK boarding the train because I can ask a member of myself. However, alighting is a different story. If the station I want to depart from has not notified my destination station, I have to ask poor, unsuspecting fellow passengers to flag down a staff member for me. There have been times where I’ve been left on the train and had to go to the next stop, cross the platform and head back in the opposite direction to where I originally wanted to get to. Or staff do know that I’m alighting but take AGES (at least 10 mins) to get to me with a ramp. Most stations are very good but (name & shame alert) cough London Euston cough have never arrived on time. Oh, I tell a lie. They’re there ready and waiting with a ramp if I happen to have upgraded to First Class. Funny that.

 

Then there’s access to places… I’ve had some really fun experiences (as I’m sure you can imagine, and I hope you can detect my sarcasm there). Firstly, I will say that wheelchair access to public places is improving (probably because there’s now a law saying that buildings HAVE to be wheelchair accessible (unless it’s a listed building).

 

One of my main irritations is that yes, places might be accessible, but it takes me half an hour extra to get to my destination because I have to go round some long way because I can’t get up the steps. Or “yes, we have a disabled access room” (**Warning** I’m going to name & shame again here). Then I get into the hotel room fine, but go into the bathroom to find that the shower is over the bath. I (and many other wheelchair users I would guess) cannot use a shower over a bath. *Cough* Premier Inn *Cough*.

I’m sorry, I guess this has turned into a bit of a moan (which is not what I wanted this blog to be about). However, I did want it to raise awareness so I hope a few of you have learned something about the everyday life of a wheelchair user. Those little things that a lot of you may take for granted are not so easy with those of us for wheels; or those of us who can only use one hand… Have you tried tying shoelaces one-handed? (I haven’t mastered that yet) Or cutting veg? Doing up buttons or zips? (Those are things I can manage now…)

**I challenge you to give some of those things a go only using one hand** (Do let me know how you get on)

Finally, I’ll just talk about the inappropriate, really personal and (some may say) rude questions people as those of us with disabilities. Most of them are about intimate relationships. Why do you need to know? Would you ask your able-bodied peers the same sort of questions? (No? Didn’t think so). I’ll let you think of the questions and decide on answers for yourselves.

I’ll post links to a couple of articles relating to disability and relationships, which I’ve read lately that you may find interesting. One man asked:

“Will you have to bring your wheelchair on our date?” What?!

My response would be:

“No, because there won’t be a date after that stupid question of yours”.

Seriously, some people amaze me (Usually in a good way, but in this case I’m amazed in a bad way).

Right, I’ll go because I’ve rambled enough. I’ll leave you with the overriding message of this blog, which is: having a disability sucks at times, but it’s not all bad. We just go about giving life our best, just the same as our able-bodied peers. We just may take a bit longer to do things than they do. (But you’ve heard the story of the Tortoise and the Hare, right?) 🙂

Take care, all

Louise xx

Links:

http://www.theguardian.com/lifeandstyle/2016/feb/21/disabled-dating-tinder-sex-wheelchair-romance#comment-69159646

http://www.bbc.co.uk/news/disability-35561347

http://mic.com/articles/85201/the-surprising-way-the-netherlands-is-helping-its-disabled-have-sex#.T6p12eS0X

(Please get in touch if you’ve read any others or have anything to say about this post… I hope it will provoke some health discussion)

 

 

 

 

 

 

 

The Joys of Volunteering

In our latest blog, Lizzie talks about her time in Voluntary work & how she didn’t let Cerebral Palsy get in her way. This is another happy story, showing that our bloggers do not let their disability stop them doing what they want to do 🙂

Hi again, folks

Today I thought I would attempt to tell the tale of how I got involved in volunteering for the National Trust and how my Cerebral Palsy was not a hindrance, in terms of doing what my role requires (except perhaps for the minor annoyance being unable to room guide in the upstairs rooms). However, as usual I’m getting ahead of myself.

I should begin with how I thought to get involved in the voluntary sector in the first place.  In 2010, at 20, I had procured for myself a little voluntary job in the summer at a local youth club helping to organise and taking part in an Art Project called ‘My Perfect Day’. The whole premise of this was to share ideas with older members of the community. There was then, a group of people under 25, and a group of people 55 and over. Each of us then had to come up with an idea for a piece of art which would be an expression of our individual ‘Perfect Day’.   This art could take any form, be it, poem, drawing, collage or knitting (quite a number of the group were keen knitters). Simple enough, right? The twist was that then you had to choose someone not in your age group, who would then have the job of producing something that expressed your idea. I remember I wrote a poem for someone, whose idea of a perfect day was dancing all night with a handsome young man in a suit. Its title was ‘A Dance to Remember.’

The whole thing was a rip-roaring success, the venue we had booked was spacious, and the people were the warmest most kind-hearted people one could ever wish to meet. The thing I remember being glad of at the time, was that I was able to use a manual wheelchair, and could thus could fit into the youth club (where we did all the organising) with no problem. It may have been difficult in an electric chair. I trust the reader will not to think I am referring to the method of execution here. 🙂

This experience then is what inculcated in me a love of volunteering. It will not surprise you then to know that shortly after my graduation in November 2012, wishing to make use of my history degree, I wrote a letter to the National Trust, asking if any of the properties in my area where interested in taking on new volunteers. I hoped to be of use as a room guide, specifically.

For those who do not know, being a room guide entails standing (or sitting in my case) in a previously assigned room and being ready to answer any questions visitors may have, or to aid people in whatever way necessary. This for the most part means answering questions on the history of the house and family, although the subjects do variety from time to time and can be quite wide-ranging.

Imagine my delight then, when I received a reply informing me that Coughton Court (in Worcestershire) was looking for such volunteers on a weekend. I duly went along to an interview with a member of the volunteer recruitment team, and was subsequently offered a post as a room guide. Ever since then, everyone at Coughton be they staff or fellow volunteers, have done everything possible to accommodate both me and my disability.  I find volunteering as enjoyable and fulfilling now as I did when I began, three and a half years ago. It has also helped me further develop skills employers always look for. I would recommend this to anyone who has time and would like to get involved in something simply for the joy of it.

I hope you have enjoyed reading this piece,

Best wishes,

Lizzie.