Tag Archives: becoming disabled

People treated me differently when I became disabled

Hannah is a 26-year-old part time student and also enjoys fundraising when she is up to it. She became disabled at 14 and, in this blog, she talks about how her experiences changed when she started using a wheelchair.

I was healthy and fine until I was 14. Then I had an ankle injury and from that I developed complex regional pain syndrome. My mobility deteriorated. I went from walking with crutches to needing a wheelchair and about a year after my injury, I was totally bed-bound. I spent 4 years in hospital and 18 months in a neurological centre. I also have hyper-mobility syndrome, dystonia, arthritis in my hip, osteoporosis and a plated femur. I came home with a 24-hour nurse and carer. I still use a wheelchair and I have an accessible car which has been good. I have more independence again. I can get to specialists and do things in the community.

People’s attitudes changed when I became disabled

In June my old school was doing a TEDx conference and they asked me to tell my story. I spoke about raising money for Starlight Children’s Foundation because they granted my wish in 2013 to go on holiday – I wanted to help them to raise money to grant other children’s wishes. I also spoke about how people changed when I became disabled.

One of my closing comments was “Next time you speak to a disabled person, try to look beyond their disability, they are just like you”. I was basically talking about how people used to see me as ‘one of them’ but now, because I’m disabled, they see me differently. I’m still the same person. It’s just that my legs and a few other things don’t work.

Some people were unsure of how to act around me. I thought if I was walking in here you wouldn’t act differently, so why are you doing that now that I use a wheelchair? It’s strange to think that people treat me differently, just because I’ve gone from standing up to sitting in a wheelchair.

Hannah smiling in her wheelchair in front of her sofa at home
Hannah sitting in her living room

Some people speak to my mum instead of me

Often people do avoid talking to me. If I’m in a supermarket and ask someone “Can you tell me where this is?” they give the answer to my mum. I don’t understand that. If a non-wheelchair user asked a question, you wouldn’t give the answer to someone else.

Whilst I was with my mum at the checkout of the supermarket helping put the groceries into the bags, it came to paying. I retrieved my debit card out of my purse and put it in the machine. I requested cashback and then typed in my pin. I took my card out and awaited my cashback. Which the checkout assistant then gave to Mum with the receipt. I paid the bill and Mum got the cashback. I’m not sure how that works?

Once when I was out with my mum, someone asked her ‘Can she speak?’ – meaning me. My mum, a bit taken aback, quickly replied “Why don’t you ask her!” I think people are afraid of saying the wrong thing but saying something is better than saying nothing.

Hannah smiling in the garden holding her TED talks programme
Hannah in the garden

People treat me like I’m just a wheelchair

Once, at a craft exhibition, it was crowded so a lady just stepped across me and held on to my armrest just to support herself. She said “oh sorry” when she realised what she was doing and I thought “don’t say sorry – just don’t do it.” That happens quite a lot. At the same exhibition a lady put her shopping bags on my feet. Which was actually really painful. I’m not some sort of stand for you to put your bags on!

People often lean over you or stand in front of you, which they wouldn’t to anyone else. Some people even switch my wheelchair off and move my wheelchair too. That’s really annoying. I wouldn’t go and switch off your car.

I often get asked personal questions

We went to go see a house to see if it would be suitable for me and the Estate Agent said to me “So what do you think of the house?” then their next question was “So what’s wrong with you?” then “Will you ever walk again?” – I’d never met her before! That’s literally your first question to me?

It’s so damaging. It’s different if people volunteer the information or if you know someone really well. I get that they might be interested but it’s very personal information. Especially someone you’ve never met before. They can walk away and just carry on with their life with no extra thought about it and you are left feeling deflated, reminded of the reality you are living in.

You look well so you must be fine

There are times when people have said “Oh you look wonderful” and I’m like “Well we’ve been up since 7 am getting ready”. I like to look smart and presentable but sometimes it gives the wrong impression.

People say “You must be fine if you’ve managed to do all that.” It makes it harder for people to understand. But we shouldn’t have to change our lives to fit into someone’s idea of what a disabled person should look like.

Everyday equality

People should think of disabled people like any other human being. We’re the same, it’s just that we have extra difficulties to face in life. Talk to them like you would anyone else and don’t make assumptions about what they can and can’t do.

You can watch Hannah’s TED talk on YouTube.

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Taking risks and the importance of support – why I wrote a book about my recovery

After an accident, Ben was in a coma for a month and has been working on his recovery ever since. He hasn’t let things hold him back, even when others doubted him. To give others hope, he’s written a book about his experiences. In this blog, he shares a bit of his story. If you want more, you’ll have to buy the book!

I got run over in the Dominican Republic. I was on holiday with my girlfriend at the time. It was the day before we left, we went out for a meal and we were walking back, literally a road away from our hotel, and a car span off the road on to the pavement and hit us both. It killed my girlfriend instantly and I was in a coma for a month. I had private healthcare insurance and that paid for me to go to a private hospital while I was in the coma and fly me back to England when I was able to travel.

Starting to recover

I didn’t know anything when I first came out of the coma. I couldn’t recognise people. My parents were there and my family but I couldn’t recognise that they were my family. To start with I couldn’t speak but that came back quite quickly.

I’d lost so much weight and I was so weak. The physio in the hospital was really good. They got me to do lots of things and my strength started to come back really slowly. Once I was out of hospital, the care team supported me for about 5 months. They were very cautious about what I could do. They wanted to risk assess everything. Fortunately I had a carer, Andrew, who’s now become quite a good friend and we just went out and did things. I think my recovery would have been worse if I hadn’t done that.

Head and shoulders shot of Ben

Basically the brain injury that I had is that my neurons were shaken up so much that they lost lots of connections to other neurons. You brain is just a bit messed up. I think over time the brain recreates those connections so it is something that generally gets better but I’m not there yet. Recovery is still an ongoing process.

Not taking no for an answer

I wanted to go to Glastonbury that year and the care team was like “no, not for three years” but that just made me more determined to go. They said recovery would take a long time, anyway and there were leaps I took to aid my cognitive rehabilitation. Leaps I took into the unknown that did help my recovery. These were leaps that people told me I couldn’t do, however, this made me more determined to do this.

Deciding to write a book

When I was seen by Hammersmith hospital they did lots of brain scans and showed them to doctors, saying “What do you think of this guy, how he’s doing?” and from looking at the scan they guessed that I would be doing terribly and would be in a wheelchair. When he told them that wasn’t the case they were like “Really? How?” – it just shows that brain scans aren’t the best way to predict someone’s future. So he said to me afterwards, you need to write about this because it will give hope to other people going through this.

I went away and thought about it a lot. I wanted to get lots of voices in and it took a long time to find someone who could edit it all together. It’s all about me and my recovery from lots of different points of view and it all comes together as a melange of different stories. To begin with it was incredibly difficult but it was good writing the bits from my own perspective, my take on things.

Front cover of Ben's book showing a profile of a person's head pieced together out of ripped up paper

I hope it helps people going through a similar experience

My experience really shows just how much support you need and how difficult it is to find the right support, but given the opportunity you can do a lot. My best support has certainly been from my family and friends but I’ve had help from people from all different walks of life. I hope people going through something similar would get something from it and also their friends and family. This has had an impact on me and my family, massively.

I don’t know what will happen next. I want to promote the book and see how that does. It’s been difficult having to change my plans. To begin with I was trying to get back to where I was, especially in terms of the job I used to do, but I’ve started to accept that some things will have to change. It’s been good to broaden my horizons.

To read more about Ben’s experience, buy his book here.

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