Leanne’s Story

Intro: Leanne is one of my friends I have known the longest. We used to go to summer school together where we’d spend hours playing Dominoes and obsessing over Darren Hayes.(He was in a band called Savage Garden. In my opinion they were one of the best things about the ’90s, but that’s not for this blog).

I’m so glad Miss busy-bee Leanne has finally found time to share her story with you, I’ve been bugging her to write a piece for ages! So thanks, Leanne 🙂 Here it is:

Hi there!

I have Cerebral Palsy, like Louise. In fact, we always used to be fairly evenly matched with regards to our physical ability. Growing up I had an almost idyllic childhood, my parents were, and still are, incredibly supportive and I rarely felt that I was missing out on anything as a result of my disability. Of course, if my friends were going ice-skating, or climbing trees, or going swimming I’d get a bit sad that I couldn’t join in but I never felt that I was having to sacrifice much. I had support workers from pretty early on in life and more often than not if I was invited anywhere, I would either have my parents with me, or someone who was there as one-on-one support for me. I used to get picked up by a school bus at my front door which would drop me outside the school gates, where my support would meet me and from that point, would be by my side until I got dropped home again.

I have always been shy and more than slightly awkward and having a support worker with me all day meant that I always had someone to talk to, it meant that I could avoid social situations in class because I would just sit with her and be perfectly happy. I would have a few friends that I would sit with too but it would mean that I would never be forced into awkward situations- that was how I wanted it- for the first time I learned how to use my disability. Along the same lines, I quickly learned that if I wanted to get out of going out anywhere, I had a very legitimate excuse not to go alone, or not to go at all. I got it into my head that I had no way of being spontaneous or breaking any rules because I was always with someone who was responsible for me and for my decisions and so skipping school was impossible, staying out late was impossible, getting drunk was impossible, meeting someone I wasn’t supposed to was impossible and I was secretly thrilled that I never had to push my own boundaries. This is all well and good until you get given freedom to start moving these boundaries.

When I moved away from home and support was on-site and I didn’t have the same time constraints with my care, I couldn’t hide behind anything anymore. All the things that were possible seemed terrifying and I felt like I was breaking the law. I was 18 before I got drunk for the first time and staying out past care curfew was the extent of my rebellion.

I’d never been on a date, because the only relationship I’d been in happened very organically and ended before anything really started and nobody would have thought it was anything more than a friendship. The thought of dating was really odd- I felt that I needed to confess to someone where I was going, who I was going with and what the plan was. I was never at ease with doing anything that would have previously been monitored by someone else. It took me the longest time to go out and meet someone and feel like it was okay that nobody necessarily knew everything. That it was okay, I could have secrets. I could kiss someone and nobody cared, it was my business and nobody else actually cared what I was doing. Even though I’ve broken through most of those barriers now, spontaneity is an ACTUAL issue, as in I can’t just go somewhere on a whim without someone there because I need hoisting onto the loo, I need a commode chair too- which is neither practical, nor sexy and the alternative is so far away from sexy that there wouldn’t be a date beyond that point. So, dating for me can’t be spontaneous and I really have to trust someone to let my guard down and explain all the different elements to my care… it’s a pretty big deal to help someone you’ve only met once to get onto the toilet and to help them do things that you probably wouldn’t even do for your family. Tinder hook-ups don’t really work too well. Is that legitimate? Or is it really just another way for me to avoid the awkwardness?

I’ve rambled on- but I’d like to end this by saying that I know plenty of people who have disabilities like mine who have had entirely different experiences, so I know that my awkwardness has so much more to do with any of the above rather than my physical ability. I learned how to mask a lot of stuff with my disability and I’m still learning that I need to take the mask off…

Time to Stop Hiding Away (Inspired by Giovanna Fletcher)

Hi Everyone,

How is it March already?! I’m sure the days and months go quicker as you get older! That’s how it feels, anyway.

So, this post has been inspired by a book tour evening I attended last night: a Q&A session with the wonderful Giovanna Fletcher. I’ve wanted to meet her for years (my closest friends have heard me talk of wanting to meet Gi for a number of year, I *love* her books!) so I was delighted when I realised she was doing a meet & greet and book signing after the talk 🙂 ❤

Anyway, Gi has talked pretty openly in a couple of her blogs and vlogs about negative body image. As her new book ,’Happy Mum Happy Baby’, tells her story of motherhood, she spoke for a while last night about not liking her changing body very much during pregnancy (or before) . However, one or two events post-pregnancy helped her to realise that her body was “nothing short of a walking miracle” for growing two children.

I’m not pregnant nor am I a Mum (and I don’t intend to be for a very long time, if ever), but I can really relate to not liking my body and constantly criticising it. So I thought it was about time I talked about it, accepted it, and realised it makes me who I am. It hasn’t served me too badly over the past 26years, I guess.

Most of you will know that I have Cerebral Palsy. A condition I’ve had since birth. It  means that my legs don’t work properly and so I use a wheelchair. However, what some of you might not realise is that I can only use my right hand. My left hand has a mind of its own and doesn’t really do much. Now, I’ve never liked it. When I was younger I called it my ‘mankey hand’ and certainly never wanted it in any photos. For instance, I won a competition in my first year of high school and my picture was put in the local paper. My teacher then wanted to put the article (including picture) on display in school and I stayed late at the end of the day to ensure she covered my left hand up when displaying the picture. “Nobody will even notice”, she told me. But it didn’t help, I still insisted, I *really* didn’t want my ‘bad’ hand being seen.

Back to last night…after the book signing (and photos) with Gi, the first thing I did when I got home was edit the photos to put up on social media. It was only today when I thought about writing this post that I realised I had cropped my ‘mankey hand’ out of the pictures to put on Instagram.

However, at the end of this post I’ve decided to share the unedited version. I am me, and I matter, even with all my flaws. Actually, people don’t care. Everyone else is *far* too preoccupied with what they look like themselves to be concerned with what I’m wearing, whether I look fat , or if my ‘bad’ hand looks particularly ‘mankey’ today.

Staying on the Fletcher theme, and to quote my favourite Mcfly Song:  “We All Look The Same In The Dark” 😀 ❤

I am me. All the body image issues I had as a teenager (and still do have sometimes) took so much from me. They stopped me having fun and wearing what I wanted to at times. They took my health, my mood, and sometimes my friendships.  I’ve now realised that it *really* isn’t worth it. I’d much rather be remembered for being a nice person who gave a damn about people and tried to do some good.

We’re all individual and beautiful (cliche as it sounds) flaws and all. I felt like I needed to share these thoughts. Big thanks to Gi for inspiring this post.

 

fullsizerender
So you can’t even see my hand really, I tend to automatically cover it with my ‘good’ hand in photos. Will try to stop this

Thanks for reading

Love,

Louise

xxx

The Long Way Around

Hey everyone,

Sorry I’ve not been around for a while, lots of stuff has been happening and I’ve been trying to show myself a bit more self-care (as is in my ethical guidelines now I’m officially a trainee psychotherapist – more on that later).

So I guess the main (negative) thing that has kept me away for so long is the breakdown of a significant friendship. One that really mattered to me, one where I really cared and I naively thought they did too. In actual fact, they didn’t and we’ve now gone from daily contact to them not wanting to speak to me again. It sucks, but maybe no contact will help me to get over it quicker.

This leads me to the more prominent point of this post: having to go the long way round. So, my fellow ‘Wheelies’ (one for Helen there <3) will know that to get to a lot of the same places that our non-wheelchair user friends do, we often have to go the long way around. This often involves going up/down some long ass ramp whereas those who have better legs than us can go up/down steps in super quick time (that’s what it feels like to me anyway, especially when my chair is having a slow day). Anyway, I don’t mean to moan too much. I am grateful to those places that now have ramps, because unfortunately they are rarer than some people who do not have to think about access might realise.

Then there’s my chosen career: Psychotherapy. It’s bloody hard, I tell you, but I feel like I’m really doing the right thing. I love client work. I feel like I’ve finally found my place and that is a wonderful feeling. However, sometimes we have to take the long way around. Some of my peers and I came to the realisation that we may not graduate at the same time due to all having different needs, placement hours, and needing to do the right thing ethically to look after ourselves and others. Yes, this might be tough, but I am proud that we’re all in a place now that we realise we need to put ourselves first and to look after ourselves in the appropriate way to be the best therapists we can be for ourselves, our placements, and ultimately our clients.

I guess what I’m trying to say is that sometimes in life you have to go the long way around to get where you want to go. Yes, it can be frustrating, upsetting and sometimes confusing, but there’s a reason for it, and if you want it, you will get there in the end. I have been struggling to ‘get over’ this friendship that (I thought) I had. Trying to fit my placement and uni work in amongst working part-time to fund my course has been tough. But I will get there, and I will make it work because I’m determined to follow this path to get to where I want to go. To be a better version of me. I’d say I’m about a quarter of the way up the ramp right now and I just need to keep going.

For instance, as much as I don’t want to be, I’m still taking anti-depressant medication, after trying twice before to come off it.One day I hope to not be taking medication, but I’m not rushing myself to come off it anymore because if it’s helping me right now, why make things more difficult for myself?

Talking about this is my reference to Time To Talk day that happened last week. Time to Change are a wonderful charity trying to reduce the stigma surrounding mental health issues by encouraging people to talk about how they’re feeling and also encouraging people to actually listen to people in return. The more people that speak out the better, in my opinion. Check out the Time to Change website if you haven’t already. Or, the campaign video: ‘The Stand Up Kid’ on Youtube is my personal favourite.

I often give myself a hard time because most of my friends are in relationships; are living with a partner; have their job sorted, and have their shit together (for want of a better phrase) and I’m sat here, in my parents’ house ‘moaning’ about it on a blog. I guess this is another example of me taking the long way around. That’s what I try to tell myself anyway, I want to get it right.

*I don’t mean to moan, of course I want my friends to me happy, but I compare myself to others too much and it’s topics like this where it’s especially unhelpful.*

Finally,

I know I’ve said it before but I feel like I need to reiterate that I have the most wonderfully loving and supportive family friends that have helped me, and continue to help me through the dark times. Sometimes they even come with me on the long-way-around ramp, they moan with me, they tell me to man up and get on with it. That’s what gets me through. Some of them I don’t see as much as I would like, some of them are too far across the country or across the world, but I know they’re there. And that makes the world of difference.

And to my newest group of friends, my psychotherapy ladies, there isn’t a nicer, more kind-hearted, funny and supportive group of people I’d wish to be on this rollercoaster of an anxiety train that we call training with. I love you all enormously!

Anyway, I think that’s it for today. Please get in touch if you’d like to share your stories of taking the long way around to get to your chosen destination. Ideally success stories, but if you’re still working to get there, share those too. We can encourage each other.

Thanks for reading, and just in case I’ve not said it already, HAPPY 2017!

Louise xxx

 

 

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.

 

Invisible

Here’s the next entry for our Poetry Competition in association with The Student Wordsmith:

Invisible
By Anwara Tarafdar

At some point in the future I most definitely
will have to get a new vehicle.
That is the nature of my illness. It may rob
me of my ability to walk. Not completely,
But devastating, nevertheless. Enough
To steal my independence if I let it.
My shiny new vehicle will have to be
The latest state of the art model.
After all, it will be the first and
possibly, the last thing people see.
They may not even see me.
The wheels would have to resemble
the alloys of an Audi A6.
The foot rests would have to be strong,
Sturdy like Doc Marten boots.
The seat would have to be soft
yet durable burgundy leather
And heated. Oh it must
Be heated! My bottom can’t
tolerate the cold weather.
I will not cover my lap with
a blanket like an invalid,
But wear thermal long johns
Beneath my leather pants
and thermal socks on my feet
inside my knee high boots.
People must not see
my new mode of transport
and only see a wheelchair!
I want it to be a vehicle they
Envy. When their weary legs complain
and when their feet are in pain
from heels too high. To be honest,
I really don’t care what they see or feel
As long as it isn’t pity or sympathy.
All I would truly want is respect,
Understanding and most of all
I want people to still see me. To look
at me, not shy away
or feel so much pity
that they cannot meet my eyes.
I do not want to be the invisible woman
in the highly visible modern
piece of technology otherwise
known as a wheelchair.

Lizzie’s Notes on Pride

I must begin this piece with a question. What would your response be when asked, much in the same vein as Heather Small posed this question in her famous and undeniably catchy tune, what in your life you are proud of? Or indeed as Heather put it: “What have you done today, to make you feel proud?”

At first this seems a simple question, until one stops to think about it. Personally, I cannot bring to mind many occasions on which I can honestly say I have felt proud of myself. That being said I do recall many a time I have been pleased about something. To me, at least, there is a difference. My hope is that in writing this I will be able to show examples of both instances when I have merely been pleased, and some of those times which might indeed have warranted the word proud to describe the particular pleasure I experienced. Thereby, I may perhaps be able to illustrate the difference between the two. Here goes nothing.

It seems sensible to start by delving in my early life to find examples. I remember being pleased, when at the age of eight I agreed to have surgery which was designed to ensure that I would be able to have better mobility as I grew older. At that young age of course, I had not the vaguest notion what the decision would mean for me. At that stage, then, I knew only that my parents were very proud that I had ‘been brave’ and agreed, and thus I was pleased in turn. I don’t think, though, that I could have said I was proud.

The earliest occasion I can remember feeling proud was on a much more trivial occasion. I was at a party when I was perhaps nine or ten, which had been arranged by an organisation called Red Caps. We, that is, my sister and, I were involved primarily because my mother was on the Red Caps committee. At this party then, I was involved in a game of musical chairs. The, for want of a better word, ringmaster would stop the music and shout something like, ‘Find someone wearing a watch’, and we children would then scramble to find someone fitting that description and drag them to a chair set up in the middle of the room before they were all taken. I remember at one point with four of us left in the game and two available chairs, the music stopped and we were asked to find a man with a beard. The other three people, dutifully went on a frantic search, but I was proud to outfox them by realising that a man standing only feet from me – the ringmaster himself- sported both a beard and a rather marvellous moustache. He consequently found himself dragged to a chair, me grinning proud to have outsmarted the others.

Some years later, I gave a speech regarding disability and the breaking of barriers to members of the European Parliament, at a conference I attended in my capacity as a Student councillor. I remember feeling proud that I had managed to get through it without ending up in a gibbering mess. I also recall being immensely pleased with the £50 I was given for my presentation, which at fifteen, made me richer than Midas.

At a similar event a year later I remember feeling very proud of my sister, Lucy, when she helped me to give a talk on disability to the Red Cross.

I was pleased when I got my GCSE results, but mainly I was relieved that I did not have to retake my maths exam, having achieved the satisfactory grade C. The same can be said when I obtained my A-levels. I suppose it may have been upgraded to pride when I was awarded my degree. I hope in the near future to be proud when I manage to pass my driving test.

What, I hear you ask, makes you most proud now? Well, if I can find a way to express this without it sounding soppy and nauseating, I am most proud these days, (always excepting the strange but great pride I feel whenever I manage to answer more than ten questions on University Challenge) is the pride I experience when I know that I have helped a friend, given advice, or had some part in making them smile.

This has been Lizzie, with Notes on Pride. Happy New Year everyone, may you all find something or someone you can be proud of in 2016.