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…

No Time for Spontaneity

Now we’re in April, this year really is flying by!

Anyway, I know this is supposed to be a positive space, and that is it’s main aim, but I hope you won’t mind me having a rant every now and again. Tonight, I need to rant.

I went to London on Wednesday for my new job induction. The other Time To Change regional co-ordinators are awesome and I can’t wait to start working with them (there’s a positive :)) I also got to see my cousin who is in London from New Zealand. We had a lovely dinner together (and a cocktail or three) and the sun was out. It was a great day.

Anyway, for those of you who don’t know, those of us with wheels have to book train travel assistance (just a ramp to help us alight the train) at least 24hrs in advance. I’d booked a certain train, but chatting and cocktails took over so I knew I was going to be late. I got to Euston 10 minutes before my next train home, went to the mobility assistance office and asked if I could have a ramp to said train, but I was told it was “too short notice”. I get that Euston is a busy station, but surely that means they have more people who can aid those of us who need assistance? It would appear not. So, I huffed and puffed and was helped on the next train they decided wasn’t too short notice (half an hour later). I had time to go and buy a coffee while I was waiting so I guess it wasn’t all bad! – See, still trying to keep positive.

It’s just annoying seeing all of those commuters who can run, sprinting across the station two minutes before train is due to depart, making it to the platform and diving onto the train with 30 seconds to spare. They get to be spontaneous, I don’t. Ever. Not where travel is concerned. Usually, I just suck it up. It’s one of those things that you just learn to live with when you use a chair. Train station assistance crew aren’t too fussed about helping those of us with wheels (or any other assistance needs) to be spontaneous. Would you be able to book a train at least 24hrs in advance if you wanted to travel? There’s no such thing as just getting up in the morning and deciding you want to go on the train. It just doesn’t work. Life can get pretty boring and predictable living by this rule, to be honest.

Now, another positive. I have nothing but praise for the travel assistance staff at Birmingham New Street station. Granted, I guess they know me now, but they are always happy to help, even if I turn up early (or late) for my scheduled train. They always endeavour to help me on the next available train. For instance, I got back to Birmingham on Wednesday and needed to get my connecting train to my local station. “It’s OK, we’ve got 4 minutes until the next train, you head up the lift and across to the other platform and I’ll meet you over there” the National Rail worker said to me. This meant I was getting the train 15 minutes earlier than my scheduled train. I would get into bed 15 minutes earlier, and after being out of the house for over 12 hours already and having to get up for work the next morning, I was more than grateful!

That’s it really, just wanted to share my frustration about certain aspects of train travel. I’m sure some of you can relate. Feel free to get in touch or comment to share your stories.

Hope you’ve been enjoying the sunshine if you are able to.

Happy Sunday,

Louise xxx

Time To Change

Hey,

Haven’t got much going on tonight so I thought I’d say hi. There have been a couple of things on my mind lately and decided in therapy today that it would be a good idea to blog about them.

Firstly I’ll start with the slightly negative topic. I’ve realised lately how damn lonely I can get and how easy it is to feel this way. Don’t get my wrong, I have wonderful friends, but most of them have moved away, live far away, are super busy with work or even live in other countries! Most people would probably say I have a busy social life. I agree, I guess I do. I like to plan activities and arrange meet ups with friends, but these only last so long, they have to come to an end. Then the loneliness starts again. I think *all* of my friends would tell you that I’m the friend that texts them the most or expects responses within the hour otherwise I think something is wrong. I appreciate this is a bit excessive, and I am trying to curb my love for texting a little, but it’s difficult. I think it’s verging on an addiction. My friends are good, I’ve had texts that say “sorry it’s taken me a while to reply, I’ve been busy at work, but I don’t hate you…” – that’s the start of the reply from the friends that know I’ll be questioning whether they still like me if they’ve taken longer than half a day to reply. I appreciate that. Thanks, guys. I know I have the best friends, and I love you all. I just wish I saw you, called you, text you, even got to dance with you more often.

So, the title of this blog: ‘Time To Change”. Basically, I’m looking for ideas from fellow text-lovers about how to occupy myself without texting as much. Cheap/no-cost options would be best. Or, how do you entertain yourselves when you’re lonely or when friends are busy (Wheelchair-friendly options, please)?

Secondly, the title of this blog also relates to my new job. A few of you will know, but I thought it was time to publically announce that from April, I will have a paid job with the mental health Charity, Time To Change. I have completed voluntary work with them in the past, delivering my personal experiences of mental health difficulties to children in various schools across the country. Our aim is to reduce stigma and discrimination surrounding mental health issues. They’re not something to be ashamed of (yes, I thought they were initially) and the more of us who speak out about them, hopefully the more people who may feel like they can open up and ask for help if they are struggling. Anyway, in April I start my role as Time To Change Regional Campaigner for the West Midlands. My job will be to create and deliver presentations to young people across the region about mental health issues to try and reduce the stigma and discrimination that unfortunately are still experienced by those of us who have/have had mental health struggles. I will then hopefully then train a variety of young people to talk about mental health in their schools and arrange campaigns to raise awareness. I’m due to have an induction on 5th April and I’m very excited 🙂

Finally, I’m at Naidex (that’s the exhibition where I rode on a segway last year) next week. It’s an event in Birmingham where I finally am part of a majority. Thousands of disabled people come together to explore new facilities/equipment and events that we can all take part in. It’s also a great place to network and chat to people who experience similar things and who just ‘get it’ (quite a rarity). So, check it out if you haven’t already. There are also a range of fantastic speakers who share their success stories and tell you what they’re up to next. I’ve met and heard from some great people there and get some good ideas for this blog. Maybe I’ll even see some of you there. Let me know if you’re attending, I’ll be there on Wednesday 29th March.

Right, that’s it for now. Basically I want to make a few changes and am looking forward to new opportunities coming up soon. Let me know if you have any ideas of hobbies/ activities I could do (maybe something a little different to the norm).

Thanks for reading, hope you’re having a good day.

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

 

 

An Update

Hi Everyone,

I’m very sorry it’s been so long since I’ve posted, life has been super busy recently (though I do realise that’s no excuse)!

A few things to update you on:

  1. Last month, we were invited to The Student Wordsmith Awards Night at Loughborough University. It was a great night with lots of wonderful guest speakers showcasing their poetry. The winner of our poem was also crowned. Congratulations, Lizzie! I shall upload her winning poem in due course.

2. I went to Naidex show at the end of April at the NEC in Birmingham. It’s about the 6th time I’ve been now and I love it! There are always great speakers sharing their stories (this year it was Martyn Sibley on the day I attended). He’s co-founded Disability Horizons, for disabled people to share their experiences of access when travelling. Go check it out! You may even see me writing a piece for their site in the near future!

I also had a go on a seated Segway, which was very cool. If I’m feeling brave later, I might tweet a picture. Oh, and I was lucky enough to meet GB Boccia star, Nigel Murray, and learn some tips about how to play.

Let me know if any of you have any of you have been to Naidex and what you think of it. We want to hear all about your experiences!

3. Finally, I know we’re supposed to be sharing positive stories, but we’re also about raising awareness. With that in mind, Tanni Grey-Thompson has decided to use #inaccessible when she’s out-and-about and finds a disabled toilet that she can’t get into/ has been used to store things/ is generally not fit to use. I thought we could join in with this, I’m sure  we’ve all had those experiences. Let me know in the comments or use the hashtag on Twitter. That would be great.

I also thought we could tweet about it if we’ve found disabled toilets that are particularly helpful. For instance, my local M&S now has two disabled toilets next to each other: one for left-hand transfer & one for right-hand transfer. The doors are labelled accordingly, how great is that?! I shall RT the picture later, go check out @Head_overwheels on Twitter (if you haven’t already).

Do let is know your positive access stories as well as not-so positive ones. It’s always good to share the positives too 🙂

Hope you’re all well. I should be more available on here over the summer as work calms down a bit.  We also have the Paralympics in Rio to look forward to, YAY! 😊

Louise

 

Hannah-Rebecca’s Story

Hi everyone,

Apologies for being so absent recently. The joys of working AND studying means this blog had to take a backseat for a while. I hope to be around more regularly from now on.

Today Hannah-Rebecca shares her story and talks about her disability education project: Considering Disability.  She’s a businesswoman and I can certainly learn a thing or two from her. I hope you enjoy reading.

Good afternoon. They call me the Queen of Awesome. I’m joking, they don’t… often. My name is Hannah-Rebecca and I’m a disability consultant. I do lots of other things too but the consultancy is where my heart lies because it allows me to tackle disability discrimination on my own terms. In May 2014 I founded a disability studies journal, called the Considering Disability Journal. I started it after reflecting on my life experiences and coming to terms with my disability identity. I have hereditary multiple exotoses. It’s a rare medical condition, but not rare enough for me to dally about being a sensitive violet (as I would so love to do). It’s a genetic condition in which the bones at my joints and around my skeleton turn outwards and cause all manner of problems. Someone once explained it to me like NF2 for bones – only accurate in very basic laymans terms. It presents differently in people and it is luck of the draw how you end of affected. I’m part of a support group on Facebook, and some people in that group talk about having thirty plus surgeries before they get out of their teens whereas I have only ever had one. I consider it an acquired impairment as it didn’t affect me until I was about thirteen – it had visibly presented since but caused me no pain whatsoever. When I hit puberty, my skeleton thought it was go time and proceeded to cause my endless difficulties – specifically mobility impairment. You can read more about this on my blog, but as I was growing up I had my classmates accuse me of faking my disability, my teachers not believing me and doing nothing to stop my classmates.

I thought about all the microaggressions I experienced; before the term was coined, before I had the vocabulary to articulate what had happened to me. As the osteochrondomas (bony growths) on my knees grew bigger my mobility was restricted, I could use them less. Suddenly, getting from the ground floor to the upper third floor for my Religious Studies class was an impossibility. From the ground floor up two huge flights of stairs for design technology – not happening. What about to the art block? Not a chance. As my impairment began to affect my life more and more, my world shrunk. I stopped being able-bodied, but didn’t yet know I was disabled. I still needed the accommodations that disability makes you need. The lift in our school was vintage – everything short of a cage and an attendant. To operate it, you needed a coveted key. The process of getting one of those wasn’t too bad, but retaining it when the early steps to discrimination started. How on earth does a thirteen year old explain to these adults that, no, this wasn’t a temporary need. No, I can’t tell you when I’ll be returning the key as I don’t magically expect my legs to start working next week. Not happy with my answer? Well threatening to take it back means I can’t get to my classes, which means more trouble for me – I presume you’ll be punishing me for not attending?

I didn’t really fit what they expected of me. I remember them being especially irritated that I let my friends travel in the lift with me on the way to class. An important part of school life is the social time between classes – was I supposed to miss out on this because I needed to use the lift? Did you want me to be contrite and alone in my difference, and isolate myself? Travel to class alone wearing a red ‘d’ on my chest because I couldn’t walk upstairs? No thank you. You’ve just read this whole anecdote and by now, you’re wondering – why is this relevant? What has this got to do with you starting Considering Disability? It’s relevant because of this: the UN Convention on the Rights of Persons with Disabilities. The international treaty which indicates how state parties should behave when protecting the rights of disabled people – article 1 outlines my right to full and equal enjoyment of human rights and fundamental freedoms. Article 3 tells me that I have a right to full and effective participation in society. Article 7 tells me that at that time, I was entitled to enjoy my rights on an equal basis with other [non-disabled] children. Article 24 tells me that there is a goal for my full inclusion in education and my social development. These are just some of the rights outlined in the UNCRPD, the Convention on the Rights of the Child gives me more and the reason this is relevant is because our government signed up to this. Our government made a commitment to fulfil their obligations and protect my rights. But rights aren’t always enforced by corporate entities, some ‘every child matters’ logo wouldn’t protect me from discrimination. People are the key to preventing discrimination and protecting my rights then as a disabled child, and my rights now as an awesome disabled female. You may think the example I’ve given is quite minor, probably doesn’t have enough gravitas to illustrate the point – I was told to keep it light. There are many more serious incidents that I can recount to you about discrimination that I experienced before I even got out of compulsory education. But, I shouldn’t have to go through something serious for you to take my rights seriously. I shouldn’t have to give you a heartwrenching story for you to take action. It should be something you should just do anyway.

I’m not unreasonable. I know it’s hard to expect people do be anti-disability discrimination if they don’t know what it is. It’s hard to protect rights if you don’t know what they are. It’s hard to meet your obligations towards disabled people like myself if you don’t understand why they’re important and why it isn’t just a tickbox exercise. Fundamentally, it comes down to education. That’s why I built Considering Disability. It’s been hard work, and we’ve still got a long way to go but we exist to take the theory of disability and the disability studies knowledge outside the realm of academia and put it in the hands of the people you encounter daily, the people who – when it comes down to it – are responsible for whether or not you experience discrimination. The people who have the potential to enact or prevent; the type of people awareness campaigns are aimed at. Education around disability is so important and yet so absent. Did you teach me in biology about anything other than a biotypical skeleton? Did you teach me in citizenship about disability? No. One in four people in the UK are disabled but I can tell you about every type of drug they taught us about in the event I might accidentally sniff one and become hooked for life. Most people will acquire an impairment throughout their life and attribute it to old age. Disability rights matters then too – people need to understand disability because if they aren’t disabled, the chances are they’ll know someone or interact with someone who is. Considering Disability is about bringing those conversations to the forefront, and promoting disability education for all.

Hannah-Rebecca Joy Guscoth

Website: https://medium.com/@MissGuscoth

We look forward to hearing your thoughts. Like and share with friends. Thanks 🙂

 

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)