I must say this is a bit of a departure from the normal content of my blog, but I think this is something important to post, as part of Blogging Against Disablism Day 2016. (For those who are coming here from BADD16, this blog usually talks about my academic work, Python programming, computing tips and other random things.)
So, first things first: many of the regular readers of my blog may not know this, but I have recently started using a wheelchair:
(This was my first time out in my new electric wheelchair, hence the look of concentration on my face!)
If you’re a regular reader of my blog and have just thought “Wow – surely he can’t be in a wheelchair, because he’s a good programmer, and a (moderately successful) academic!” then please read to the end of this blog, and ideally some of the rest of the BADD posts!
I’m not going to go into all of the medical stuff here, but basically I can walk a bit (upto about 100-150m), but anything more than that will utterly exhaust me. This situation is not ideal, it has only happened in the last six months to a year or so, and it has taken me a while to adjust emotionally to “being disabled”, but – and this is the important thing – a wheelchair is, for me, a huge enabler. It gives me freedom, rather than restricting me.
My wheelchair doesn’t restrict me doing many things by its very nature (and in fact I can do many things that non-wheelchair-users can’t do, like carry very heavy loads, hold a baby on my lap while walking, and travel 10 miles at 4mph consistently) – but the design of the environments that I need to use on a day-to-day basis do restrict what I can do, as do the structure of the systems that I have to work within, and the opinions of some people.
I’m going to talk about things that are particularly related to my field of work: academia. I really don’t know how to organise this post, so I think I will just post a bulleted list of experiences, thoughts, observations etc. I’m trying not to ‘moan’ too much, but some of these experiences have really shocked me.
One other thing to bear in mind here is that many of these things are just because people “don’t think”, not necessarily because they are deliberately being “anti-disabled people” – but in the end, the practical issues that result affect me the same amount regardless of the reason behind them.
So, on with my random list:
- I was told by a senior colleague to “keep my disability quiet from the potential funders”, as they probably wouldn’t give us any money if they knew I was disabled (ironically, this was when we were arranging to meet these potential funders and I was planning to turn up in a wheelchair!)
- I was informed by the university insurance office that when travelling to a conference the university insurance would cover my electric wheelchair, but I would be required to cover the excess of £1500 if there was a claim. This was because it was a “personal item” and therefore treated the same as any other expensive personal item, such as a diamond ring. I’ve now managed to sort this – and there should be a new university-wide policy coming out soon – but sorting it required pestering HR, the Equality & Diversity team, the Insurance Office and my Faculty. Surely someone had travelled with a wheelchair before?!
- I went to an Equality & Diversity event at the university with various panel discussions that didn’t touch on disability as an Equality/Diversity issue at all – the focus was entirely on gender, race and sexuality. I’m aware that there are probably more women in the university than disabled people (!), but actually if you take into account the statistics of the number of people who are disabled in some way then it must affect a large proportion of staff!
- I went to a conference in Edinburgh which was held in a venue that was described as “fully-accessible”. The conference organisers (who, I want to state, did everything as they should have: checking with the venue about accessibility before booking the conference) were told that everything would be fine for me to attend in a wheelchair, and I was told the same thing when I phoned in advance to check. Just two examples from my three day conference should give you an idea of what it was like for me:
- It took me about ten minutes to get, in my wheelchair, from the main conference room to the disabled toilet, and this involved going through four sets of doors. One of these doors was locked (and required a code to open), and I was originally told that I’d need to find a security guard to ask to open this door every time I wanted to go to the toilet! Umm…as an adult I’d rather not have to ‘ask permission’ to go to the toilet…so luckily my wife memorised the code! There were multiple times when other doors along the route were locked too. I felt like a second-class citizen just for wanting to go to the toilet!
- After the conference dinner one evening I was told that there was “no step-free way for me to leave the venue”. I was somewhat confused by this, as I had entered the venue without using any steps…but it turned out that the main entrance gates were locked and “they couldn’t find the key”. After disappearing for ten minutes to try and find a key, their suggested solution was to carry me down some stairs and out of another exit.
- The lifts in many university buildings are barely large enough to fit my (relatively small) wheelchair, meaning I have often got stuck half-in a lift…not a fun experience! There are other wonderful things about many university buildings and environments, including entrance ramps to buildings that are located at the bottom of a flight of stairs (why?!), disabled toilets that are only accessible through very heavy doors (almost impossible to push in a wheelchair), and the fact that the majority of the lecture theatres are not accessible for me as a lecturer!
- It is often assumed that, as someone in a wheelchair, you must be a) a student, and b) need help. I’ve been stopped by people many times on campus and asked if I need directions, or help getting somewhere – despite the fact that I’ve been working on that campus for nearly 10 years now, and I don’t look much like a student. I don’t mind people offering to help (far from it) – but it shows an in-built assumption that I can’t be a staff member, I can’t know what I’m doing, and I must be a ‘helpless person’.
That’s just a few things I can think of off the top of my head. A few more generic points that I’d like to make are:
Why is it that at least 50% of the time, people who say that they will make some sort of “special arrangements” for you because of your disability do not actually do so?! I just can’t understand it! Examples include:
- The hotel that booked an “adapted room” for me, except that I didn’t actually get given an adapted room because “they were all in use” (surely they knew that when booking me?!). They did manage to provide a stool for the shower, and the room was large enough to get my wheelchair into – but why on earth did this happen?
- The special assistance person at Heathrow who just disappeared after giving me back my wheelchair, leaving me to try and wheel around all of the queues at passport control rather than going down the ‘medical lane’ (which I didn’t know existed)
and why is it that the organisations that are meant to support you are so often unable or unwilling to do that?! For example:
- After spending four months going through the Access to Work scheme to try and get an electric wheelchair which I need for work (and which I was assessed as needing for work), I was rejected and told that I didn’t need it and wouldn’t be funded it. It’s called Access to Work and I needed my wheelchair to access work – it’s not that difficult (luckily my family offered to fund my wheelchair). I know the answer to this (it’s about government cuts), but I’m not going to go into a rant about the government here!
- The university has a lot of support for disabled students (with a whole disability service, Disabled Students Allowance, the Counselling Service and so on), but nothing like that to help staff.
- Everything just takes a huge amount longer, and none of the systems are designed to work well for people with disabilities. This ranges from travelling around the building (the lift in my building is hidden in the far corner and it takes a long time to wiggle around the corridors to get there), to booking events (most people just book a flight online: I have to have a half an hour phone call with the airline giving them pages of information on my wheelchair battery) to doing risk assessments (don’t get me started…). For someone who is working part-time anyway, this takes up a huge proportion of my time!
The combination of these examples – and many more that I can’t think of right now – is that I often feel like a second-class citizen, in academia, on campus, when travelling and so on. This isn’t right – but the silly thing is that it doesn’t take that much effort to change. Many of the examples given above could have been changed without much effort or much expenditure. Most of them are really simple: just don’t say anti-disability things, if you promise to do something then do it, add some chairs, prop the door open (or officially give me the code), don’t lie about the accessibility of your building, and so on. It’s not that hard!
Anyway, I’d like to end on a positive note, with an example of a conference that is doing pretty-much everything it can to be accessible and inclusive. It’s not actually an academic conference, it’s PyConUK 2016 – a conference on the Python programming language. When I read their diversity, accessibility and inclusion page I actually cried. The headline on that page says “You are a first-class citizen of our community”, and then goes on to discuss what they have done in detail. I’ll let you read the page for the details, but basically they offer financial assistance, a free creche, a quiet room to relax away from the conference, step-free access, BSL interpreters, speech-to-text translation, and more. I’ve spoken to the organisers and thanked them for this, and after the conference I’m intending to ask them how much extra this inclusion work has added to their budget…and I suspect the answer will be “very little”, but it will make such a huge difference to me and to many others.