Wednesday, 30 January 2013

"Better off dead"? Time to educate

A couple of days ago a twitter friend of mine was fed up by some frustrating things which tend to happen to disabled people periodically. She let off steam on twitter with the hashtag #heardwhilstdisabled.

This resonated with many disabled people who started to add their stories too. Before you knew it #heardwhilstdisabled was trending and continued to do so throughout the day, creating a testimony to the sort of ignorant, rude and sometimes upsetting comments disabled people too often face.
It created enough of a storm for the Independent to write about it.

Personally I recognised most of what was written. I quite enjoyed the day and reading the thread. It reminded me I wasn't alone and it wasn't my fault these sorts of things are said.

I used to get very upset by the things said to me. These days, it usually makes me laugh. The exceptions to this are things that stop a disabled people doing something (eg refusal to grant disabled access, or to serve someone) or actual violence.  For this reason I was amused rather than upset by a lot of the thread, although I accept that for some it must have made for harrowing reading.

I feel maybe I should explain my change in attitude, particularly given the anger my own examples gave rise to, in particular this one:
"If I were you, I'd kill myself" (perfect stranger, me happily waiting to cross road in powerchair on way to work) #heardwhilstdisabled
This, perhaps understandably, upset many people. I was asked how I'd reacted to it, with a number of people jokingly suggesting running him over and many saying they would have retorted it would be better if the stranger killed himself.

Rather naively I was surprised at the depth of anger and feeling. I don't feel this way and it is MY example! I admit that at the time I was very taken aback and totally shocked. But as I explained to the people on twitter what I actually did was:
I told him I loved my life and for all he knew his life was worse than mine. He didn't look happy at that! #heardwhilstdisabled
There is a good reason for this rather than my getting angry with him.

There is a flip side to #heardwhilstdisabled. Although I have lots of examples (and many more than I shared), they are spread over a period of 12 years. Over the same time  I have seen many people be friendly and approachable or go out of their way to help me, both friends and strangers.  In my experience there are friendly helpful people, indifferent people (probably the majority), ignorant sometimes hurtful people and malicious nasty people.

To the surprise of most people I class the chap who told me he would kill himself if he was like me as ignorant and hurtful, not nasty and malicious. This is someone who cannot imagine life in a wheelchair. This is someone who probably enjoys many things you cannot do in a wheelchair and cannot conceive giving them up. Faced with this he can see only one way out.

I can understand this. As I wrote in my last blog post, when I was 16 I was a sport fanatic. I remember I once foolishly and blithely said that if I couldn't play sport anymore I would want to die. At the time all my spare time was spent playing sport and I loved it. I was in France and school was hard and elitist (trust me, it is unlike anything you know here!). Sport was my escape and literally my life.

I honestly believed what I had said about wanting to die if I could no longer play sport. But strangely enough, here I am, mostly bedbound, as far away from playing sport as you can get, and with no desire to die whatsoever.

Admittedly I would never have gone up to a disabled person unable to play sport and told them that if I were like them I would want to die. There is NO excuse for that. But the feeling was there nonetheless. I couldn't think of a life without sport. I couldn't imagine coping without it.

I was ignorant but also underestimating my own ability to adapt. When the time came and I became ill, then disabled, it turned out that not only was it possible to adapt in ways I had been unable to conceive of but that life could still be quite fun thank you very much! In fact I know of people who are far more unhappy than I am.

So when faced with someone saying something like this, given enough time I feel I should tell them that
a) I enjoy my life
b) My life may be just as good as theirs
c) Everyone can adapt, including them

Now, this isn't to downplay the difficulties of being sick and/or disabled. And to get a) and b) you need the proper support and facilities otherwise life is going to be pretty awful. This is why I and many others have been fighting government cuts to social services, support and benefits.

But no one should think that someone who is disabled is automatically better off dead. There is always so much you can do, even stuck in a bed! I want to educate people on that, not simply get angry. And having stupidly thought something similar myself as a young teenager I feel maybe I can see where people are coming from and perhaps change their minds from "I would kill myself" to "I'd hate to have to do it, but I would adapt".


  1. Totally agree, its about balance.
    I havent yet met anyone say something with nasty intent (even a family member who should know better)

    when I out and about i always look up at the person and smile a welocme and say hello, often people especially shop workers etc dont know what to do and for the fear of offending panic a by appraching them with a smile and letting them know i can gives permission to relax.

  2. Sadly I have met at least two people with nasty intent.

    The first spat on my legs and called me "freak" as he walked past me. I was in my manual wheelchair being pushed by my dad on a sunny family day out in the middle of Weymouth. By the time we realised what had happened the guy had vanished into the crowd. I'm actually quite relieved because I don't know what would have happened if my dad had confronted him.

    The second was a man (probably drunk) outside a pub who came towards me fists raised as I drove past in my electric wheelchair. He shook his fists and yelled that I should have been "killed at birth". I shrug it off now and joke that the feeling was mutual, but the truth is that I was really afraid and scared for my safety. I was very glad of the extra turn of speed my outdoor electric wheelchair has.

    That said, those are only 2 incidents in 12 years, so hardly a commonplace occurence. I hope there won't be any more but am prepared that it may happen again at some point.

  3. I think in 12 years most people (regardless of health, race or gender) have experienced unwarranted anger from a stranger, especially around closing time outside a pub. It's not nice and it is scary but if you are healthy you can run away. If you're not healthy and not in a power chair, it limits your escape velocity somewhat.

    But, I do agree in your case it was probably ignorance and lack of mental editing that made him say that he would kill himself. People find it so hard to believe that even in daily pain and exhaustion there is so much you can find to value and enjoy. Sometimes I think by taking so much away from your life you gain much more pleasure from the things you have left that you enjoy. The enjoyment is less diluted by other things. I am happier now than I was for most of my life before I got sick. That's because I have built a life around my sickness that has the right people in it and hobbies that I enjoy.

    1. While I agree that most people may havve experienced anger from people around closing time outside a pub, the second experience I mentioned above wasn't like that.

      First of all it happened in the middle of the day around lunch time. I was travelling along a fairly busy street and this man was standing against a wall. It was only the next day that I realised that there is a pub there and I am giving him the benefit of the doubt that he had been inside and was drunk.

      In any event he singled me out from the crowd for his abuse and threatening behaviour. As far as I could tell he did not shout at anyone else once I had gone far enough down the street.

      If you go out to a pub and are in the streets at closing time you might expect drunken behaviour. If you are travelling down a busy street in the middle of the day minding your own business, you do not. You certainly don't expect to be singled out from the crowd and threatened. I don't for a moment accept that this happens to most people.