Friday, 10 May 2013

No More Collin Brewers

It was a horrible story but one which did not surprise me overmuch.

Collin Brewer

Collin Brewer, a Cornwall councilor, came into the media spotlight a few months ago for comments he had made in 2011 to a "Disability Cornwall" worker at a charity event, saying that "disabled children cost the council too much and should be put down."

While offensive in the extreme I'm sad to say that I know that a number of people do feel a similar way and secretly feel that maybe it would be kinder to let disabled children (and some adults) die. It is too often seen when people say that they would rather die than be disabled, or that it is cruel to let a child suffer (ie be disabled). A lot of this is due not to malice, but plain fear and ignorance, something I addressed in a previous post "Better off dead? Time to educate".
However this was rather different as this was not about the wellbeing of the child but callously purely financial considerations.

After a lengthy investigation the Independent Standards Committee ordered Collin Brewer to write a letter of apology, 18 months after the incident itself.  There was public outrage at the leniency of the punishment and the fact that a councillor with such views could remain in office.

Originally defiant, Mr Brewer gave many excuses for his comments, ranging from trying to provoke a debate, to a flippant remark, to being "hot under the collar" due to a budget meeting. Although he said the comment was a mistake and not something he believed, he also drew attention to people who supported his views, repeatedly mentioning receiving messages of support, including in particular from other councillors who agreed with him.

He eventually resigned only to stand again for re-election just 2 months later and in a shock result won by a margin of 4 votes. In a sickening twist he praised the media attention he had received, saying it had done him a "power of good", "promoting" him and making him "well known".

Disability News Service have since interviewed Mr Brewer to get to the bottom of the story. There can now no longer be any doubt about his views. He openly says that there is a good argument for killing some disabled babies. He first likens the situation to a conversation he had with a farmer who has to put down deformed lambs at birth and then bitterly complains of the burden of disabled children on the council once their parents die.

This is a free country. People are allowed to hold this view if they wish without being arrested for it. However it is difficult to see how it is possible for an elected official to responsibly and without prejudice carry out their duties which will have repercussions on disabled constituents if they consider their lives to be worthless and think they should be dead.

People are now once more protesting and calling on Mr Brewer to resign. Others are complaining that you shouldn't be punished twice and that you can't override democracy.
This puts me in a difficult position. I do not think that Mr Brewer is fit for office. However I also agree that you can't punish someone twice for the same crime, nor that you can disregard an election simply because you don't like the result.
On the other hand it may be that Mr Brewer in his joy at being reelected has said quite enough other offensive things since his reelection to warrant another resignation! The DNS article speaks for itself.

The Real Villain

In my opinion there is a villain of the piece which has not been mentioned enough and that is the Law and the Independent Standards Committee.

  1. Why was a letter of apology deemed a sufficient response? Forget resignations, surely we should be able to sack politicians for such offences.
  2. Why, after someone is forced to resign for such a serious reason as this, are they allowed to stand again  for reelection just 2 months later?

We need to ensure that behaviour of this sort is stamped on strongly. Our politicians need to know that it will not be tolerated and that they have a duty to properly represent disabled people (or any minority for that matter).
We need to ensure that should a politician have been found to fail in this duty and had to resign, that they are banned from standing again.
I think this is perhaps what we should be focusing on. This is what we should try and change.

Getting Collin Brewer to resign solves this particular case but will not stop it from happening again.

On the other hand if we could review and change the procedures which are in place to deal with such misdemeanors and the rules for re-election once resigned or sacked, then we could ensure that there will not be another Collin Brewer. One is quite enough.

Monday, 6 May 2013

Disabled? No comments from you!

The BBC ran a health story today reporting that 25% of adults walk less than an hour a week. This was based on a poll from the Ramblers Society conducted on a sample of 2000 adults.

They were running a "Have Your Say" comments on it and I idly posted wondering if they had taken disabled and elderly respondents into account who couldn't walk well in the first place.

My reason for asking is quite simple. Since becoming a wheelchair user and, more recently, mostly housebound, I have been very amused at how much I can skew polls, surveys and things such as character tests.

The most recent example was the "Great British Class Test" which tried telling me I wasn't cultured. As someone educated to PhD level who listens to classical music, is an avid reader and watches things like history documentaries and theatre, this was somewhat baffling. It eventually turned out to be because I never left the house. If you took into account things I WOULD do if I physically could (and in fact things I was doing until just a few years ago) the results were very different indeed. I tweeted about this and it was picked up and discussed in a BBC Ouch! article.

Going back to the "25% of adults walk less than an hour a week", if I had been phoned up for the survey and agreed to take part, I would imagine it would go something like this:
Are you over 18?
In any given week would you say you walked over 7 hours a week, 4-7 hours, 1-4 hours, or less than an hour?
Well, less than an hour, but...
That's great, thank you for your time
Yes but, that doesn't really count you see because...
Thank you.
I very much doubt there was a question like "Do you consider yourself disabled?", which in any case wouldn't help as it wouldn't necessarily affect walking. "Are you able to walk?" wouldn't be any better as some people are able to walk but only stupidly short distances. They understandably won't be walking for miles each week!

Given that there are 2.55 million blue badge holders in England alone (roughly 5% of the population), not taking mobility difficulties into account could make a difference to the results. Even people who aren't disabled enough to hold blue badges might still have significant difficulties.

Disabled and elderly people make up a significant proportion of the population. Yet when these polls and surveys are made we are blatantly often forgotten about. Questions are often irrelevant and there is no "not applicable" option. I often take the results with a pinch of salt as a result.

This isn't so much a problem when I'm taking a test for fun, but it *could* be an issue when survey results are used to decide government policy, issue health guidelines or perhaps make business decisions in private companies.

I was highly amused though to see that my comment was lambasted by other readers. It got a high number of negative votes.
I was less amused to see that another reader who agreed with my comment and explained that their pain and wheelchair use meant that they didn't walk also got negative votes. What kind of person does that?

So why was my comment disliked so much? I'm not really sure.
Was it precisely because people felt that as a disabled person who couldn't walk I WAS irrelevant and shouldn't be commenting?
Was it because people (probably wrongly in my experience) thought the poll creators would have thought of this?
Was it because people were having so much fun being holier than thou and telling everyone how much they walked and therefore how better they were than most of the population that they didn't want any comment that might cast doubt on it?

So two points.

  1. All you poll and survey creators out there: we disabled and elderly people do exist. Remember that, otherwise your results WILL be skewed.
  2. Disabled people are allowed to comment on topics concerning activities they can't partake in. Disability is a valid reason for not walking an hour a week. Marking down a comment saying so is a sad comment in itself on the BBC readership. 

Thursday, 2 May 2013

Fighting illness isn't always about battles

I like days like today.
I woke up feeling terrible and have felt very ill all day. (I know I'm definitely ill when I switch on my favourite video game, pick up the controller, groan and switch it all back off again!)
BUT... I have had a good day.
TAKE THAT illness! *pulls rude childish faces and blows raspberries*

I got to spend some all too rare time with my youngest sister who leads a hectic lifestyle in London as a freelance classical musician (french horn). She had stayed the night and I HAD intended to take her out for lunch.
I was most put out as I had been doing really well recently (relatively speaking) and was sure I would be well enough to do so. But after learning that pizza is apparently very expensive in London for some reason, I ordered some and we had a picnic in the garden followed by strawberries. She then went off to catch her train.

By then I felt far too ill to do anything at all, so slept and watched my fish tanks all afternoon. By evening I felt well enough to speak coherently with my friend who had come to visit. We had a good old chat before watching a couple of episodes from "Game of Thrones". We have both read the books so know the plot, but are really enjoying the series anyway. It is very well done.

I hope I will feel better tomorrow, but if I don't I have plenty of little short things I can think of to do even while feeling dreadful.

So there you have it. Today might have been considered a loss and a failure. I didn't manage to take my sister to the pub. I was incapacitated for the majority of the day. And let's face it, I felt like death warmed up!
But in fact I enjoyed my time with my sister anyway, had a wonderful lunch, some precious time outside the four walls of my flat and an enjoyable evening with my friend. I call that a win.

Had I tried to "battle on" and go to the pub one of two things would have happened:
1) I would have collapsed or had to come home early and caused a scene and great distress to my sister.
2) I would have "made it" but not enjoyed a minute of it and caused worry to both myself and my sister as we would both have been wondering if I was about to collapse.
Instead I was able to spend a relatively pleasant time with sister despite the fact that I wasn't feeling at all well. Neither of us was worried or concerned. We enjoyed our meal. We enjoyed our surroundings. 

Had I tried to "battle on" during the rest of the day and do things, I would not have been able to enjoy the evening with my friend and, from past experience, I know I would likely be very ill tomorrow. As it is there is every chance that I will recover. If not, well, at least I have given myself the best possible chance to do so.

I didn't manage to get much done today but, well... there IS a reason I'm on long term sick leave from work! Right now it means that if I have to put things off to tomorrow, or the next day, or the day after that, it usually isn't the end of the world.

I strongly believe that beating the illness isn't always about battling on and doing things despite it. I think it is about enjoying life even when feeling very ill and even when your plans have gone awry.

Wednesday, 1 May 2013

BADD2013: Can or Can't Work, a Disability Dilemma

Today is Blogging Against Disablism Day 2013. For more posts visit here.

Despite huge advances in accessibility and support disabled people remain underrepresented in education and work.

According to the Office for Disability Issues:
19.2 per cent of working age disabled people do not hold any formal qualification, compared to 6.5 per cent of working age non-disabled people
14.9 per cent of working age disabled people hold degree-level qualifications compared to 28.1 per cent of working age non-disabled people
In 2012, 46.3 per cent of working-age disabled people are in employment compared to 76.4 per cent of working-age non-disabled people.

It is perhaps unsurprising then that while I was still working as a university researcher (and previously as a PhD student) I met what I would term "casual disablism" in the form of total disbelief that somone "like me" could do a job "like this".  

It was very common for people to ask why I was in the university building where I worked. I distinctly remember one conversation (but by no means the only one):
What are you doing here, love, can I help you find the way out?
No thanks, I'm fine. I work here.
Oh, that's nice. Have they found you a job in the office?*
No, actually I'm one of the researchers. I'm on my way to my own office.
Really? I didn't think people like you could do that sort of thing
*Not that there would be anything wrong with an office job, but it was the "found you" (as though it would be "make work") and the belief that I couldn't possibly do anything else which was rather telling.

While I was still establishing myself as a researcher and people didn't yet know me, I had the same problem at conferences. Another example is this conversation:
Hello, are you lost?
Um, no. I'm the invited guest speaker...
Oh my goodness. That's amazing. You'd never think so, would you?

I found the attitude from people at conferences deeply worrying. You have to understand that these were not only my peers and colleagues with whom I would work with on my research, but also my future interviewers for any job that I might apply for. If this was their attitude toward disabled people it did not bode well. This was semi-confirmed when I phoned up to confirm wheelchair access for my first important job interview and I was asked if "I was sure I was up to the job".

I have to say that there was a part of me which always found all of this rather strange, given the famous icon Stephen Hawking who is trotted out whenever anyone says they are too sick to work.  Either all disabled people are like him, in which case people shouldn't have been astonished to see me in my electric wheelchair, or he is an exception to the rule, in which case he shouldn't be used as a stick to beat people who are too ill or disabled to work.

So I'd like to move now to a dilemma this poses. I have a progressive illness which has got much worse over the years. I did my degree, PhD and worked for 5 years with increasing disability, but, more importantly with increasing illness, more and more time off sick, working from home, more and more part time and symptoms which interfered with my work. Eventually I had to call it a day and am now claiming long term sickness and disability benefit, ESA.

ESA and the test for claiming it (WCA) are deeply controversial and need much improvement. I myself have steadily been campaigning for this in any way I am able to. However, when fighting for improving this process, we need to be very careful not to reinforce the stereotype that all disabled people are unable to work or do high grade jobs. It is a very difficult and fine line to tread.

As I have had a very good job as a disabled person and as a very ill person I know that it is possible to 
a) work when very disabled
b) work when very ill
c) be too ill to work

When campaigning against welfare reform people sometimes hold up a specific example of a person who was refused their benefit to illustrate that the ESA process is flawed. I find this very dangerous as it risks reinforcing the disablist belief that every single person with that same impairment, disability or illness can't work.

I strongly believe that everyone should receive appropriate support. 

If they are truly unable to work then they should receive sufficient support to live adequately and not be hounded as they are now nor made to feel guilty or unworthy. Changing people's perceptions is key here. It IS possible to be too ill to work. Many people still believe for instance that if you can use a computer then you can work. I wrote about this in #BADD2012. The government itself would do well to listen.

If they feel able and want to work, then they should receive every bit of support available to do so, even if they are very ill or very disabled and regardless of whether or not they would "pass" the "fit for work" test to receive benefits. Indeed, I would have been eligible for incapacity benefit or ESA right from the start of my illness, but as I had a flexible job with a supportive employer, I felt able to work. I therefore did not claim it and instead received very good support to help me work instead such as Access to Work.
Therefore increasing funding and availability of Access to Work and simultaneously working with employers to increase their willingness to be supportive and flexible is crucial. But changing the perception that disabled people can't work or hold down high level jobs is also key. 

Juggling changing both perceptions at the same time is a complete and utter nightmare. But it must be done.