Before I needed the assistance of a wheelchair, I personally believed that the world we live in is disabled friendly. Little did I know the reality is far from that. Yes there are lifts and the occasional dip in the pavement but that’s it? How can that be it? Think about doing your weekly shop in a supermarket, how can a wheelchair user like my self reach the top shelves without asking for help or leaving that item behind. Think about getting on the train how easy is it when abled bodied compared to someone like me, we have to wait until the end to get on so the conductor can put down the ramp, then when on board despite the train being semi-empty people decide to sit in the disabled bay, meaning my wheelchair is parked in a unsuitable and very unsafe place. No one thinks to move and I’m too infuriated to ask. Passengers then get angry that I’m parked at the doors, look at me like I’m purposely trying to ruin their day. Older people refusing to move as they belief its their designed right to sit in those seats, they’ve worked all their lives right so surely they can block the disabled bays? Don’t worry I’ll sit in front of the doors, wheelchair sliding everywhere including heading towards the glass doors. Oh don’t forget the conductor who moans and sighs because he’s got to get out a ramp to help me get off the train. These aren’t preferences they are my rights as a disabled wheelchair user. I have a right to have a safe space on the train, I have a right to maintain my independence and go out but by making it difficult for me it makes it very hard for me to enjoy the world.
When in a wheelchair please dear God don’t touch my wheelchair and move it without my consent. Whilst Christmas shopping a middled aged man took it upon himself to remove me from the popular 3 for 2 isle as I was evidently in the way of him looking for presents for his wife, instead of saying excuse me like you would to an abled bodied person he pushed me out the way. Didn’t even say ‘Can I move you?’ I couldn’t help but laugh at him and shout some French. He evidently didn’t see me as an equal but just someone in the way. I don’t think he thought it through and he especially didn’t foresee the way in which I reacted.
Please don’t try and cut me up when I’m in the wheelchair, as its big and bulky and I’m not a good driver so I can’t always stop last minute and it’ll be painful if I run over your feet with it. For a few seconds of your life please wait. There’s been so many times I’ve nearly catapulted out due to Greg having to stop me at the last minute.
I don’t have mental or intellectual disabilities so please don’t treat me like I do. I’m competent and I am able to have a conversation with you. There’s no in between people tend to go over the top explaining things or the avoid you and look like they’re dying of embarrassment when you ask them a question. Once I was in a well known underwear shop browsing through the sale items, I needed a particular size and asked the sales assistant if she could kindly get me one, in which she then started to ask me why I needed such a nice set of underwear. She looked puzzled when I explain that I was still a woman and loved to surprise my partner with nice undergarments. She then tried to ask me if my partner was disabled like I and was totally blown away by the fact he is fit and healthy and walking around on 2 legs. She was mesmerised! I couldn’t help but worry that programmes like ‘Undateables’ are creating a sub culture where the general public are starting to believe that individuals who are disabled can only date other disabled people.
Whilst shopping for bath items, an assistant came over and asked if I needed any help in which I replied no. During this time, the assistant stood still just watching me, other customers were asking for help and she was just in a world of her own which featured me. Whilst picking out what I wanted the assistant walked over to me carrying a particular bath bomb, she asked me to smell it and said it would make my skin soft, so I put it in the basket. As I was wheeling away, she asked me if I knew the smell in a majorly patronising way, may I add in a very busy shop. The bath bomb smelt predominantly of lavender which I absolutely love! When I answered she looked perplexed and slightly irritated like I’d said something wrong. She didn’t understand why I knew what it smelt off. I then explained that I love the shop and shop there online every pay day, so I’d come a costumed to all the smells. She just presumed that I either couldn’t smell or I couldn’t figure out what it was by myself. So she asked my partner Greg what type of things I liked, instead of addressing me. Don’t get me wrong she had good intentions, it just came across incredibly patronising and I think such companies should have better disability training. It comes down to such companies putting money to such training programs.
I’ve had many pleasant experiences whilst out using the wheelchair. Ones which have refreshed my faith in humanity. One day of the summer I had an appointment at a different hospital, Greg had been working so I had to meet him there. That meant I had to travel there on my own but this day was particularly very warm and my first day out in the wheelchair on my own. To start with I’d under estimated how difficult and tiring it is to propel yourself. I’d managed to get my self on and off a train and a bus which I was majorly impressed with but due to being on a new bus route, not wanting to miss the stop I accidentally got of the bus 2 stops early. It was a busy area of Manchester where the students congregate so I was unable to park up and google the route. My hands were blistering and I was exhausted after pushing myself around. The appointment was really important and I was scared I was going to miss it. So I parked up and started to cry. A lady appeared and asked if I was okay, tear stained and embarrassed I said yes. She could clearly see I was visibly upset. She asked where I was going, I explained what had happened. She told me she worked at the hospital as a secretary and she would show me the way. Not once did she acknowledge my wheelchair she treated me as if I was abled bodied. After about 5M she could see I was struggling. She acknowledged in such a dignified way; she explained that she had anxiety and she finds big crowds and new places scary and she thought I was remarkable and inspiration that despite my disabilities I was owning it! That I was still prepared to do something that pushed me out of my comfort zone. She explained that it wasn’t a bad thing to accept help at time, that it didn’t make me weak. She never just took control of my wheelchair or even touched it until she asked and gained my consent. She said my courage was making her consider getting help for her anxieties, she said if I could master and be independent with my disabilities she could also. Once we reached the hospital she took me to the relevant department despite her being late. I’m forever grateful to this lady because she gave me the confidence to ask for help when I’m struggling, she refreshed my opinions on the general public. She made me smile for days on end. She saw me as Robyn and not wheelchair girl.
I just want to raise awareness and challenge stigma around young people using wheelchairs. It’s difficult and I get a lot of negative attention, especially of older adults. I typically hear people commenting that I must be doing it for benefits. Once a taxi driver challenged me and said that I’m disgusting for using a wheelchair despite my legs working, I explained to him that my legs work perfectly well, I use a wheelchair because I get horrific debilitating pain and get fatigued fast. Using a wheelchair means I can out the house. He said I’m part of the reason why the economy is crashing and the NHS is failing and I should be dealt with like they do in other cultures ‘seen and not heard’ and my family should be paying my way. I was devastated that people have this opinion of me. All that judgement from being young in a wheelchair. He didn’t ask my diagnosis, so when I told him about my tumours and my treatment he went scarlet rightly so. This would be enough to deter anyone from using a wheelchair and it did for a while but eventually I’ve learnt to have thicker skin.
Once whilst out shopping I’d forgotten my disabled toilet key, so I approached the toilets hoping someone would let me in them. My stoma bag was at maximum capacity and needed access to the toilets fast. An older woman wouldn’t let me enter one of the toilets because on that day I’d put on some make up and done my hair. According to her I looked well enough despite using the wheelchair. She again told me I should be ashamed to being using facilities that aren’t designed for me? Now this pushed my buttons, she was using her 2 legs now I’m not saying she wasn’t in need of the toilets in question but how dare she question my access. As a young lady with no bowel, stoma and urine incontinence not forgetting I was in the wheelchair so needed the room to manoeuvre myself and use the appropriate facilities I was furious. She locked the door behind her and told me to ‘use my little legs she knew that worked’ and use the ‘appropriate’ toilets. I burst into tars and started to wheel away to find an alternative when I heard the same woman offering to open the disabled door for a family to use, no small babies or children with them. Baring in mind the toilets in question don’t have baby changing facilities. So do you know where I ended up changing my bag? In a shop changing room, how degrading! I’ve never left my key behind since.
Ramps, pavement dips and lifts just aren’t enough to aid someone in a wheelchair. Lots of lifts in the city centre aren’t working, that means I cant’t access particular shops and facilities. Pavement flags are uneven and have cracks in meaning I get stuck and it makes it difficult for me to manoeuvre myself without really excepting myself. Don’t get me started on the dips in the pavement to aid me to cross the road Normally I have to go 5-10m out of the way to come back on my self just to cross the road? Why do the council have to make it so difficult for me to be independent?
I also think there needs to be better training and education about helping disabled customers and more training in schools and work so everyone understands how to help someone like me without ignoring me or feeling awkward. If we was all up to date, the world would be more accessible to me. I’d have more confidence because I’d know if I was to run in to trouble that people would aid me. The council would implement better accessibility. Things will never change if we never challenge them. The sad reality is eventually I’m going to be in a wheelchair long term and I’m scared that i’ll be confined due to public perception and accessibility.
TV programmes such as the ‘undateables’ doesn’t help people who have long term disabilities. It makes the public perceive that there is something undesirable about us. It also supports the stigma around disability instead of challenging it. We aren’t walking freak show so don’t stare, yes we have sex and some of us have long term relationships with abled bodies people. We are dateable, just like any body else!
Here’s my top tips for aiding someone who’s out in a wheelchair:
1) If a wheelchair is ever in your way, please don’t ever touch it without asking. Just ask the person in it, I’m sure they’d be more than happy to move out of your way.
2) Don’t presume someone in a wheelchair needs help all the time, if they seem to be struggling to manoeuvre then approach them in a sensitive way. To loose your mobility is undignified and sometimes we like to deal with it ourself to maintain independence. Ask if there’s anything you do to help instead.
3) Please don’t stare at those in a wheelchair and trying to second guess what’s wrong with them. We deal with enough stigma and scrutiny from the government we don’t need it.
4) When engaging in a conversation with me please speak to me like I’m a competent independent young woman. Don’t speak to me through my partner. I love to talk and engage in conversation.
5) Those in a wheelchair still like to engage in drinking alcohol, partying, laughing and enjoy sex so don’t pass judgement. We’re like everyone else. We just need adjustments to enjoy them. Yes, we are ill but we can still enjoy ourselves so don’t pass judgment on what you think we should and shouldn’t be doing.
6) Some days we look better than others for example I might put on some make up, that doesn’t make me any less disabled and I’m not less deserving of assistance because of that.
7) Please don’t cut me up whilst I’m in the wheelchair its unsafe for both me and you