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.

#BADD2014: Academic Battles

NOTE: Since this was posted so close to May 1st, I am also submitting this post to #BADD2014, Blogging Against Disablism Day. Please do follow the link to read other blogs too. My "official" BADD2014 post can be found here.

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Chatting and posting on PhDisabled has really made me think back to my PhD days. Many sick and disabled PhD students are struggling with many issues directly related to disability and illness which have a great impact on their research.

It was only when I started to share some of my own stories that I realised just how many battles I had had to fight. While my chronic illness was pretty well supported, as a visibly disabled student using an electric wheelchair there were huge needless issues ranging from access and "health and safety" to outright stereotyping.

In my last post I addressed how I worked through my PhD with a chronic illness. In this post I go through some of the many unnecessary battles thrown up during my time as a PhD student and beyond, showing that disablism is sadly alive and kicking.

 

Visible Problems!

Strangely, being visibly disabled was, for me, less well dealt with than my illness. This is despite the fact that you would have thought being a wheelchair user at the start of the twenty first century was no longer a big issue. The Equality Act 2010 was still a few years away, but the DDA had already been in place for many years.

Yet for instance I was at various stages banned from my own building, banned from the library (I was a "fire hazard"), banned from my office a second time for a whole 3 months while health and safety argued over whether I could bring in my portable oxygen.

Even when I eventually won the right to enter my own office I was placed under strict time restrictions due to my personal evacuation plan which involved 2 members of staff getting me out via the fire-proof lift. I could only be in the building if both members of staff were present.
Ironically, this evacuation plan would not be used in the event of a real fire as it would be "too dangerous" for said members of staff. I would instead be left on my own in the presumably burning building until the fire crew arrived. Kafkaesque? Yes. But true.

I was the only person in the whole department who, if renting a car, had to arrange my own private transport to conferences etc, paid out of my own private money and then claim it back months later. This was due to the fact that the university did not have a contract with a company which owned wheelchair accessible vehicles.

No one told course or talks organisers that a wheelchair user would be present. It was left to me to find out what courses I'd be doing, who was responsible for them, and to let them know about my access requirements. (This appears to be common and an unnecessary addition to a disabled PhD student's workload.) Unfortunately this was often repeatedly forgotten and talks had to be moved at the last minute.
This was not much appreciated and I, rather than the organiser, was blamed, as shown by emails sent to all staff saying

"Sorry for the inconvenience, we've had to change the room for the wheelchair user AGAIN!". 

Imagine how I then felt as we traipsed across to the other side of the campus in the pouring rain.

I was often the butt of annoyed "jokes" about this. The whole situation was unnecessary. I raised the issue of the emails, pointing out that information about the room change could be given without raising the question of wheelchair access, but was told that I was being "too sensitive".

During my time in the department a project was started with the installation of great new technology whereby several lecture theatres at different universities could be linked up via an IT network. A talk, seminar or lecture could be given remotely and followed at several universities at once, a bit like skype on a grand scale.
There was dispute as to which room this system should be installed in. To my horror I found out that a non wheelchair accessible lecture theatre was a strong candidate. 
I was appalled, particularly as due to deteriorating illness, travel was becoming more difficult and I intended to make use of the technology. I also felt that disabled academics are particularly likely to need this and in any case it would also be wrong to exclude us from any lectures given via this medium. This went not only for me but for any future students and members of staff as well.
This was eventually taken on board after I talked to several people, and the chosen room was wheelchair accessible. However this created some bad feeling due to the fact that it was smaller than its inaccessible counterpart and I received some nasty comments as a result.

Due to the age of the building a standard sized electric wheelchair couldn't get around, and so I used a smaller electric wheelchair when getting around during my office hours. I became the victim of bullying on the part of one particular person who took exception to the fact that my outdoor electric wheelchair needed to be stored in their larger open plan office. This person verbally abused me and even somehow physically removed my wheelchair and left it in the corridor.
Rather than address the issue I was told that person was leaving soon (in a couple of months) and perhaps I could work from home until they did. In the end I made arrangements with another colleague and left my wheelchair in their office. However this was both unacceptable behaviour and resolution of the problem.

Finally, I often encountered what I would term "casual disablism" in that people assumed that I was not a PhD student or a researcher simply because I was a wheelchair user.

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 also had the following conversation at a conference

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?

This was by no means the only example and is rather worrying when you consider what it reveals about fellow academics' attitudes.  This was semi-confirmed when I phoned up to confirm wheelchair access for my first important academic job interview and I was asked if "I was sure I was up to the job".

When I did finally graduate one final hurdle was set in my path. The university had 2 graduation halls. One was wheelchair accessible and the other not.
The university refused to guarantee that my ceremony would be held in the wheelchair accessible hall. I was told I would have to wait for the timetable (issued 2 weeks beforehand) to find out.
No one in my department was willing to help. No one seemed to think this was a problem and everyone just thought it was acceptable to "wait and see".  Yet while my fellow PhD students were eagerly making plans for the day, I was nervously waiting to find out if I could attend my own ceremony. I had to make reservations and rent out gowns etc without knowing whether I would be able to use any of it. As it turns out, I was lucky.
I made an official complaint about the process, pointing out that having an accessible awards hall does not make the graduation accessible if you are not guaranteed to have access to it! I do not know whether changes have been made. This is a typical example of how something can look accessible on paper but not in practise.

Later on, after my PhD, when I obtained a research fellowship I discovered that there were fundamental flaws in the application process for any future grants I might need which were discriminatory. I won't go into them here but it creates a strongly uneven playing field for disabled people who get past the early stages of an academic career.

Still worth it

Yet despite all these setbacks and fights, no one should lose sight of the fact that studying and working in academia can be hugely rewarding and for me was worth every single battle.

That said, I think academia needs to wake up to the fact that it still has a long way to go before it is fully inclusive and not rely on the fact that it is "better than 20 years ago". This may be so, but there are large improvements to be made, and with the recent cuts to DSA things look set to get worse rather than better.

My PhD with Chronic Illness

Image description: young woman in blue and maroon PhD graduation gown sits smiling in an electric wheelchair

Chatting and posting on PhDisabled has really made me think back to my days as a PhD student.  Many current sick and disabled PhD students are struggling with issues directly related to disability and illness which have a great impact on their research.

I completed my PhD with both a very visible "disability" and a long term chronic illness.
The disability didn't really impact on my work but, surprisingly was horrifyingly badly accommodated by the university (I have written another entire blog post on the subject!).
My illness on the other hand had a very big impact on how I worked, but luckily I was very well supported by the university.

Adapting to Chronic Illness

The single most important thing was that I had a very good relationship with my supervisor and I made sure that he had a good understanding of my illness. This did mean revealing diagnoses etc. Not everyone would be comfortable doing this, but this was a choice I made and it worked well for me and the supervisor I had.

We had gone over in detail what I could and couldn't do.  He knew in advance that I would NOT be doing a normal working week and that there would be periods of time when I wouldn't do any research.

One thing I soon found is that there is no such thing as "normal" if you are sick.  I needed to forget about what everyone else was doing and concentrate on what worked for me.  It really didn't matter if I did things completely differently to everyone else. Different is never bad per se as long as I get where I need to.  Luckily I had the full support of my supervisor in this regard.

Split Office + Home Working:

My PhD was in Mathematics, so I needed no special equipment and technically could work anywhere. As one of my "disability accommodations", the university allowed me to work from home as much as I liked, even paying for a home printer, laptop and broadband.

When I was "well" or "as good as it gets", I still couldn't work all day. I always felt at my worse in the afternoon and it soon became clear that working at that time was simply inefficient.  Since I was definitely going to have to have time off and there is no official scope for that in a PhD (there is no equivalent to sick leave), I needed to make every single hour count. So I always worked when I felt at my best, regardless of what time it was. Conversely I didn't make myself work when I felt absolutely awful. The quality of the work was generally poor and I just made myself feel sick for longer.

So I started only going into work in the morning and coming home and resting or even sleeping in the afternoons. I would then maybe do a few hours late evening (eg 10pm-1am).
On the other hand I was often up at 3am in pain or with other symptoms. I soon found that that time could be put to surprisingly good use.  I took to jotting down ideas and/or reading "easy" research papers.
As time went on and my illness deteriorated I would alternate days I went to the office. For instance I might go in Mon, Wed, Fri and work fully from home Tues, Thurs.

I asked that most PhD seminars and teaching get timetabled in morning slots. This was mostly done and was of great help to me throughout my time as a PhD student. The location of said seminars was not always so well looked after, but I was very impressed with the way the university accommodated this particular requirement.

Conferences or talks at other universities were extremely difficult for me and I had to rest for long periods after. I worked from home for days after any such event. I went to less conferences and events than my fellow PhD students and as such these were carefully selected to maximise their use and impact.

Housebound: (12 months on and off)

Other times I was housebound but still well enough to do actual research (ie working on my own new original ideas). During those times I plugged away and kept in touch with my supervisor by email and skype.
Roughly 12 months of my PhD were spent this way on and off. These housebound patches were unpredictable. I might be housebound for a week here, a couple of months there and so on and so forth.

The biggest problem here was probably not academic but emotional, mental and social. The lack of contact at the office is obviously very isolating. Throughout my PhD I would always try to go into the office when I could, not really because I needed to for work, but because it was good for me mentally.
Luckily I pretty much lived on campus and was able to get a social life going by inviting people to my flat. This became a regular event with people coming round for lunch and evenings several times a week. This really helped prevent me becoming lonely and disconnected from university life.

Hospital and/or Horribly Sick! (8 months on and off)

There were also times when I was either in hospital or housebound but so ill that original research  just wasn't possible. Those periods were spent doing "background reading". Some of it was even undergraduate or Masters level. If nothing else it kept my brain ticking over. Roughly 4 months of my PhD was spent this way.
This might not have been so bad had it been under my control. The thing is that it happened at unpredictable times: a few weeks there, a month here, a few days there and this was extremely disruptive.

At least 4 months were spent in hospital/recovering and so ill that even background reading was impossible.
I was "lucky" enough to get a very good result (proof of a new mathematical theorem) quite early on in my PhD which meant that my success was pretty much assured from 20 months in. Therefore because things were going so well, my supervisor was happy to let me just rest until I felt well enough to start working again.
Thus I was not required to take a leave of absence, avoiding the bureaucratic and financial difficulties that many sick and disabled PhD students face at precisely the time that they are at their lowest.
I am of course very aware that I was extremely fortunate in that regard and that not everyone would be able to do this.

Success thanks to flexibility but at a cost

Working this way I was able to complete my PhD on time. I think the thing that got me through was easily being able to switch between my 3 different working modes: very sick (home background reading/hospital/recovery), sick (housebound but doing research and in contact via email/skype), "as good as it gets" (research by morning office hours+ home working, + occasional conference/talks).

However I recognise that spending an enforced 8 months doing background reading or even nothing at all, yet still finishing on time will not be possible for everyone. The subject I was doing helped a lot (no lab work + an early "result") and I think this was the deciding factor. I think I would have struggled far more in other subjects, however good I was at them and would have needed time off, with all the financial and administrative issues that entails.

Ideally there would be provision in the system for someone like me who is ill: ability to go part time, extra funding, etc. I would certainly have welcomed it and felt under less pressure. But there isn't. At most you can defer, but are left without funding or support.

Despite the fact that my PhD couldn't have been going any better, I continually felt very much that I was in a "sink or swim" position, and under tremendous pressure to "be well". Ironically this was likely to be counterproductive and make the illness worse. In the later stages of my PhD I had to keep reminding myself that things were going very well and I did have some leeway if I got sicker.

Additionally I was always playing "catch up".  I would be on target and then have a period of bad health and feel that I was behind again. My trick in the end was to try always to be slightly ahead if possible, (as long as I didn't make myself sick in doing so).

This came at a big cost. Although I did have time for a few social evenings as long as they took place at my own flat, most of the time every "useful" waking hour was spent working. The rest of the time I was resting or simply really sick. So although I was successful in the end, it was at great expense, sacrificing nearly all of my leisure time. I imagine this is something a lot of my fellow chronically ill PhD students can identify with.
I think these mental, emotional and physical burdens for sick PhD students cannot be emphasised enough. It is a huge addition to an already difficult task.

After my PhD, when I got my funding for my first research fellowship I did, in fact, go 75% part time. This finally took some of the pressure off at the times when I was very ill and unable to work at all. I also had some time to enjoy a more balanced lifestyle. Emotionally and mentally things became much easier.

If more people with chronic illnesses are to succeed then more part time work and study and the ability to flexibly slip between them should become available. This IS possible and the best example I know of is the one offered in the Dorothy Hodgkin Fellowships. I would love to see more research councils and universities offer similar schemes in the future.

"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".