Sunday 17 August 2014

"Here, let me do that", Pride or Impatience?

Picture the scene.
I'm opening the main door to the block of flats.  It is a yale lock.
I ease my electric wheelchair as close to the door as it will go.
I lean up and insert the keys.
I put my arm back down for a few seconds (lifting my arm like that is hard and painful).
I lift my arm again to twist the keys. My other hand is ready on the joystick.
As the key turns I edge the wheelchair forward, pushing the door open, which incidentally wrenches the keys from my hand.
I move the wheelchair forward, retrieve the keys from the lock, and drive onwards to my flat, letting the door bang shut behind me.

This sounds like quite an ordeal and yes, to some extent it is. But I have been doing it for ten years and am quite used to it. On the other hand if I am with a friend then I usually chuck my keys at them and ask them to open the door. No need to hurt my shoulder unnecessarily.

I was less than impressed though when someone walked up behind me when I was half way the process. They became impatient, leaned over and grabbed my keys from the door, saying "Oh, let me do that". When I objected, they pointed out that "they could do it faster than me".
Although true they hadn't really thought things through as we were now left in a slight dilemma: they couldn't get to the door round my wheelchair and I couldn't move without running them over!

This is a typical example of the wrong way of "helping" someone. Just because you think you could do it "better" doesn't mean you should, and certainly not without warning or without consent. In this instance I was perfectly capable of opening the door. This person just got impatient.

Very often disabled people who turn down help are seen as being "proud" or having a "chip on their shoulder". It is not uncommon for non disabled people to get cross when this happens. I have been on the receiving end of abuse for very politely turning down help. (eg "Thanks for the offer but I'm fine at the moment" led to "You're all the same, you lot. Well **** off then.")

But sometimes "help" can be unhelpful.
I have had people get things down from a shelf which I didn't even ask for or want and then get angry when I politely said so. (What am I supposed to do? Buy random items strangers get down off shelves?)
When I could still wobbily walk with a stick, I had people grab me by the arm, which did more harm than good, and occasionally made me fall over.
As a manual wheelchair user, people sometimes unexpectedly grabbed my chair and tried to move or push it. This can be very frightening if done without warning!
As a wheelchair user I have also had people enthusiastically try to open automatic doors for me, or doors I didn't want to go through (including a door to a flight of stairs). But I think I am now digressing into a whole new realm of absurdity!

Moving back to today, there are some tasks which, if I am feeling well enough to do and they don't hurt me, I prefer to do myself. I don't care if I am slow or awkward doing them.
If friends or family are present I am nearly always asked if I'm sure I don't want them to do it for me.
I would stress that this is not them being overprotective. As I have a fluctuating illness there are days when I really would need their help. But if I answer that I am ok to do it, they always respect my reply and leave me to manage. (and should I change my mind half way through, they will also come to the rescue!)
This is absolutely the way it should be.

It wasn't this way from the outset. There was a learning curve on both sides after I became sick and as my disability progressed.
For my part, I had to learn when I needed help and when to ask for it. This was not necessarily a matter of pride, but a matter of relearning what I could and couldn't do.
For their part some of my friends and family over the years had to learn to respect my decision to do things, even if from their point of view it would be "easier" for them to do it.

You see, at the end of the day, I have people do lots of things for me. These are the things I couldn't do even if I tried. I appreciate that help. But to sit back and let people always do the things that I *can* do would seem very wrong and certainly completely unnecessary. Not to mention that should I do this, then I would never do anything at all.

If someone can't accept that and insists on doing something for me anyway, against my wishes, isn't that saying more about them than it is about me? Maybe it is more about embarrassment, or a lack of patience, or even a desire to "look good" on their part than an excess of pride on mine.

Monday 4 August 2014

Disability Prejudice really does exist

I will never forget Michael Portillo's interview of disabled comedian Francesca Martinez in which she raised the issue of disablism and a hardening of attitudes towards disabled people. He and fellow panellist Andrew Neil, white, middle class, non disabled, both assured her she must be mistaken as new laws have been put into place and besides which neither of them had ever personally encountered prejudice on the grounds of disability and they both think attitudes have improved!

It is this disbelief which is so hard to fight and is so damaging as it prevents any progress being made.
It is fairly easy to find examples. Whenever an article or blog is written by a disabled person about prejudice or discrimination, you will always find comments written by non disabled people disbelieving the author.

Take for instance this excellent post "This is what disability binarism looks like" by "That Crazy Crippled Chick". It decries the ablist meme recently used by George Takei making fun of a wheelchair user who has the temerity to stand up to get alcohol from a shelf.
It describes the prejudice and sometimes even abuse encountered when a disabled person uses a wheelchair but can also stand or walk very short distances. A raft of comments follows by fellow disabled people adding their own experiences and thanking the author for her post.
This does not stop Wendy, against all the evidence and testimonies from all these disabled people, from confidently saying "I don't believe it would occur to any normal person to believe that someone in a wheel chair is faking because they stood for a few moments or moved from their chair to a bus seat."

I think this disbelief has two root causes. The first is that most people are pretty decent and will not act in an overtly malicious way. The second is that a lot of people will not recognise more subtle prejudices and discrimination or simply think disabled people should just "accept it".

As a small and petty example I personally came across, many don't see why the work or club Christmas dinner should be moved to an accessible venue "just for the wheelchair user". Instead they think that the disabled person should "accept that they can't go everywhere".
Now while I fully accept that many places cannot be made wheelchair accessible for practical, historical or even financial reasons, there is no reason not to make sure the venue for the Christmas dinner is wheelchair accessible. Yet for me, this was a yearly and completely unnecessary battle for which I was seen as an annoying trouble maker.

There are many other small passive incidents, often carried out by people who would consider themselves "disability friendly". Taken separately each is fairly small. But add them together day after day and life can sometimes become quite difficult.

Then there are the large nasty incidents. When I recount them I am usually met with disbelief or told I am exaggerating. Close on the heels of this is often a question along the lines of "What had you done?". People are unwilling to believe that non disabled people could act in this way and the fault and responsibility must therefore lie with me.

For instance I sometimes tell people that I have been sworn and spat at simply for being in a wheelchair. The response comes back that either it was my attitude or I was in a dodgy location/time of night.
In one incident I was on a family day out happily being pushed down Weymouth High Street by my Dad. Out of the blue a passing stranger spat on my legs and hissed "Freak" at me before disappearing into the crowd.
When I elaborate and explain, the response usually comes "I can't believe that". So that is it. End of conversation. People would rather believe that I am lying/exaggerating than believe that someone would behave in this manner.

When I was looking for somewhere to live and visiting flats, in separate incidents current residents told me "someone like you can't expect to live somewhere like this" and "we don't want your kind here".
When I did find somewhere to live I faced a battle to get a discrete ramp put in as apparently "it would give the wrong idea".

These are quite extreme incidents, but you can add to these the stares, the nasty comments (eg "People like you shouldn't be let out", "You should have been put down at birth", "If I were you I'd kill myself"), people getting angry when politely asked to let me get past, people running past at till queues and laughing, threats when using disabled parking (even when using a wheelchair) and on and on...

Again, if I tell people about these incidents the reaction is complete disbelief, often followed by "I have never encountered anything like this".

Well, no... As a non disabled person I am not surprised that you have not been stared at, insulted or threatened in the street, spat at or told that you are not wanted. I am not surprised that you have not struggled to get people to ensure you can access the building where meetings or social events are being held.

I am also not surprised that you are unaware of the fact that disabled people often face these battles, because most of the time we simply don't talk about it. This doesn't mean it doesn't happen. The least you can do though is not treat us as as liars, blame us, or dismiss us as exaggerating when we do raise the issue. This in itself is acting in a prejudiced manner, putting the beliefs of non disabled people over the experiences of disabled people.

Finally, even if you would never do the extreme things mentioned in this blog, it is highly possible you very unintentionally do smaller passive things which make life harder or unpleasant for disabled people.

For example, practical obstacles?
  • Do you park on the pavement or drop curbs?
  • When you put your bin out do you ensure there is enough room for a wheelchair to get past?
  • Do you make sure you look at the person you are talking to if they have a hearing impairment?
  • Do you inadvertently lean on people's wheelchairs? (highly uncomfortable and annoying)
Or more insidious attitudes?
  • Do you complain about how unfair it is that disabled people get "special treatment" or "perks"? (eg parking/benefits/work equipment)
  • Do you complain about minor changes put in place for a disabled person? (eg a change of venue)
  • Have you ever disbelieved, blamed or dismissed a disabled person when they explain how difficult something is? (eg finding a flat/disabled toilets/accessible social venues/social care)? 
  • Do you give well meaning but unsolicited medical/lifestyle advice to disabled people? Do you get upset if they don't follow it?
  • Do you get angry/hurt if a disabled person politely refuses your offer of help? (sometimes "help" is more a hindrance than anything else or really is simply not needed)

The vast majority of people do want to do the right thing. But to do that, the first thing that is needed is to listen and accept what we are saying. In my experience many people don't do that as the truth can be very uncomfortable.