Sunday, 30 March 2014

PhDisabled: Making Life Easier

A guest post for PhDisabled.

Doing a PhD while sick or disabled isn't easy, I know. Here I share just a couple of the things I did which made my life easier.

Official help

As soon as possible contact your university's Disability Office. Depending on how good they are they may be able to do some of the legwork for you.
They may be able to help you with some of the official things like claiming Disabled Student Allowance which can get you equipment or support for the duration of your PhD. This can take a while to come through so needs to get sorted at the earliest opportunity.

Who to tell?

This is a bit of a dilemma for those of us who have "invisible disabilities". In my case it was a bit weird because I had both highly visible (wheelchair) and invisible disabilities (chronic pain, fatigue, epilepsy and many other issues). This meant people were sometimes confused as to why I couldn't do something: "but there's a ramp"!

Your supervisor

My personal opinion is that you need to be completely open with your supervisor. They need to know what you can and what you can't do, your strengths and your weaknesses. This way you can play to your strengths throughout your PhD.
This may mean a weird timetable (I didn't work afternoons for instance), slacking off during an off period and working harder during a good one, being happy to do meeting through skype, varying what type of work you do at what times (eg I did a heck of a lot of background reading when very sick and back to hard research when better) etc...

Your way of working may be different to everyone else's. Mine definitely was. It doesn't mean it won't work and you won't get there. But you definitely won't if your supervisor doesn't know about it, isn't supporting you in it and is expecting you to work exactly like everyone else.

Everyone else

Seminar/course organisers

The other people you might want to tell are talk and seminar organisers.
Personally if my attendence is going to be unavoidably erratic, then I would rather they know that I am sick/disabled than they think I am lazy. In any case you may have access issues which they may need to know about. Depending on your disability/illness these may be a bit more complex than simply "a wheelchair ramp".
If your supervisor is good he or she may do this for you if you wish. It all depends on whether you trust someone else to adequately get across the reasons for poor attendence or strange access needs. It is a case of swings and roundabouts. It might be better coming from a fellow academic, but they might not get it quite right!
If you do have access requirements then you will almost certainly need to contact them and I suggest having a standard letter for this.

Fellow PhD students

This is a very personal decision. I did end up telling a few people, if only to quash the idea that I was slacking as I always went home in the afternoons. I started dropping in the fact that I worked in the evenings and even, quite often, in the middle of the night. Maybe I shouldn't have cared, but the jokes started to annoy me.

Talks and Conferences

It is up to us

The thing to remember is that not all staff are adequately trained when it comes to disability issues. The same goes for conference and talk organisers etc. The fact is some won't give disability a second thought.

Unfortunately this means it is up to us to make sure that things will run smoothly. This will soon become an unwanted and unsustainable added workload and stress unless we are adequately prepared. As soon as possible try to identify what your requirements are.

In an ideal world we would tell our faculty office what these were just once and then they would sort things out for the rest of our PhD, informing the critical people who needed to know. In my experience this doesn't happen. If this is also your experience then I suggest preparing two letters with your access needs.

One is for your requirements around your department for talks and seminars. You can send this by email at the start of each semester to the organiser of every postgraduate course you take and every seminar series talks organiser. These are the people who usually have to sort out timetabling and rooms and so they need to know if things like special times or accessible rooms are required.
As I mentioned previously, if you prefer and if you have a good supervisor, you might ask them to do this for you. This will definitely not be an option for everyone though.

The other letter is to send to conference organisers at other institutions and I give much more detail further on.


What do I need? 

This may  include purely physical access (can I get into the room?) as well as timing (am I well enough to attend at all times of day?), seating (can I sit where I need to?), home working (can skype or similar be set up if I am too ill to attend in person?)

My own experience

During my own PhD I requested two things: wheelchair accessible rooms and, for PhD seminars and talks, morning timetabling whenever possible due to my illness.
The morning timetabling was not always possible depending on the timetable of the lecturer giving the course, but a great effort was made to accommodate me and the majority of courses were given morning slots.
Later, as I became sicker, we set up skype and I watched some seminars or participated in some meetings from home.


Please remember that conferences are organised by "ordinary" lecturers or PhD students on top of their usual workload. They may not have had any previous experience with disabled students or staff. Simply sending an email stating something like "I'm a wheelchair user" is really not enough.

Standard letter

I wrote a standard letter for use at conferences which I would sent to the organisers very early on.
This stated that I was looking forward to the conference and needed to discuss certain access requirements due to my disability (whether you wish to disclose the precise nature of your illness/disability is up to you. I usually didn't.)
After this ask after the things as needed. The following list is not in any way supposed to be exhaustive, try to think about what you personally require and adapt accordingly.


If you require wheelchair accessible rooms, remember to state what that means. I know that sounds silly but I have had the experience of having level access but doors too narrow for a standard wheelchair to get through! So remember to state level access with doors 80cm wide.
If you are giving a talk remind them that you need to be able to get to the front of the room (many have a small platform you will not be able to get up on).
Many universities do not take this into consideration when stating that a lecture theatre is "wheelchair accessible". It seems they do not expect the lecturer to be a wheelchair user! Warn the organisers of this (it will avoid last minute chaos, which is really not fun).
Similarly if you have sensory requirements, explain what that means.


Even if parking is usually not allowed close to the buildings, most organisers will waive this if you are disabled. If you have access to a car don't hesitate to ask if you can use it around campus and use the disabled bays, particularly if it is a large campus and the talks are spread out. If you don't have a blue badge sometimes they can issue a university badge for you for the duration of the conference. Don't hesitate to ask if this is possible.


Again, if you have an illness which means timetabling is an issue, let them know at this stage. Sometimes if you contact them early enough in advance they will make sure that the talks you want to attend are at the times you need them to be.


Check where the accommodation will be. If you need to rest often, ask to be placed in the accommodation closest to where the talks will be held. Sometimes they are even helpful enough to open up a hall they weren't planning to use.

This way during my own PhD I was nearly always able to get accommodation close enough to the talks that I could go and lie down when I needed to.

If you receive care and have a PA accompanying you ask for an extra room at this stage. You can also ask whether this room can be funded by the conference. Usually conferences will allow your PA to get into the conference for free. Many will also waive the accommodation fee. But you have to ask.

Disability Website

Finally, I would look up the website of the university and find the page of their disability services. I would include this in the email and suggest the organisers contact them if they wanted advice.
I would then ask the organisers to get back to me with any questions.

This may seem a bit daunting, but once the letter is written you can use it throughout your PhD for every single conference. You don't have to keep thinking about what you need. A conference comes up, you simply send your email and then answer any further queries the organisers might have. If there are problems you will also know about them well in advance and be prepared.

Obviously I would recommend making these requests in as polite and friendly manner as possible. Don't expect all your requests to be accepted every time, depending on what they are. For instance timetabling can't always be changed as we would like, depending on guest speakers. Things like accommodation and access needs on the other hand should always be sorted out.
I found most organisers to be extremely friendly and looking to find a way round things. Some or most of my requests were nearly always met and that meant I was able to attend conferences which would otherwise have been completely inaccessible.

Good Luck!

There are probably things I've forgotten but this is already getting far too long. I hope some of this will be of some help to those of you currently doing or starting PhDs. To all of you, good luck.

Sunday, 23 March 2014

Blue Badge Blues

Addressing a few Blue Badge Concerns

It isn't fair. Why should disabled people get special treatment?

Without disabled spaces I and many disabled people wouldn't be able to park and get out. Perhaps some people think it would be ok for disabled people to be housebound simply for the lack of disabled spaces. But this is what equality is. Equality of opportunity. Disabled spaces don't make disabled people better off. They mean they have the same opportunity to leave the house and go in shops, hospitals etc as non disabled people.

There are far too many blue badge spaces. They aren't needed.

I and many other disabled people would disagree. Given that we are the ones using them, we are probably more aware of the times they are full than non disabled drivers, who, in turn, are more likely to grumble when they see them empty but never notice when they are full.
I can't count the number of times we have been unable to park. The difference with a non disabled person is that if there is no disabled parking space, I have to go home. I can't park further away, or in a different car park.
So there should always be a free space. If there isn't then the next disabled person to come along may have to go back home.

Too many people abuse blue badges. You see them getting out of their cars, looking fine and walking off.

Yes, blue badge abuse does happen and it should be tackled. Far too often I see blue badge spaces taken up by cars which are not displaying a blue badge. And yes, there are also cases of people using blue badges inappropriately.  However this is a minority.

You do not have to be a wheelchair user to need a blue badge. You do not even have to have a mobility aid. A lot of people "look fine" but still have a lot of trouble walking. Among other things this could be due to breathing problems, heart problems, pain or exhaustion.

Many of these get worse the more you walk. So such people could look really good when they first get out and get worse and worse as they struggle round the shop. They may run out of steam and need to get back to the car early and so it needs to be close by for them as getting across the car park would simply be too much effort.

So please don't judge or abuse blue badge users. If they are displaying a valid blue badge, then that should be accepted, even with doubts. The problem otherwise is that genuine disabled people are constantly harangued and become scared to go out.
The only people who could arguably be challenged are those parking without displaying a blue badge.

I hate these people who get to the supermarket, use their blue badge and then walk for miles round the shop. If they can do that then they don't need a blue badge.

I've already touched on this in the previous answer, but this is something a non disabled person who has little limits on their time or distance on their feet has great trouble understanding.
15 years ago when I was still walking with a stick, from the moment I got out from the car I was on the clock, both time wise and distance wise.

I had to carefully plan my route through the shop. If I forgot something in an aisle, then tough. I couldn't go back and get it, otherwise I wouldn't make it back to the car. That extra distance of walking back to the aisle and back again would have tipped me over my limit.

Likewise with time. Out of the car: "tick-tock, tick-tock". To the entrance: "tick-tock, tick-tock" Round the shop: "tick-tock, tick tock".
At this point I would start looking at the queue. If it was long I would have to abandon my shopping even if it wasn't completely finished because you know, Stand in queue: "tick-tock, tick-tock, tick-tock, tick-tock". And finally, back to the car: "tick-tock, tick-tock"

This is why I needed a blue badge. That extra distance to and back to the car made all the difference. Yes, to you it might "only" be 100 feet, but to me that might be a whole third of the total distance I was actually able to walk and/or the time I was able to stay on my feet. Take that off my "useful" shopping distance /time and I wouldn't get any shopping done at all.

Additionally there were times where I started off ok, but ran out of time and had to struggle back to the car. If it had been further away I simply wouldn't have made it but would have had to collapse wherever I was (this did happen a couple of times before I got my blue badge).

I hate these people who use a stick to walk and then get into the shop and miraculously recover and put it in their shopping trolleys!

I did this. A shopping trolley is exactly the right height to lean on. It is a brilliant ready made zimmer frame. I could walk far longer leaning on a trolley than I could walking with my stick.

Disabled people who don't drive shouldn't have blue badges.

I can't drive but still need a blue badge.
See above for when I was walking with a stick and could only walk a limited distance and spend a very short time on my feet. We couldn't afford to waste that crossing the car park. Likewise, unless there was somewhere to sit, I couldn't be dropped off and wait around while my friend/relative parked elsewhere.
I also needed the extra space surrounding the car in order to get out (I wasn't very mobile). This is even more true now that I use a wheelchair (whether it is manual or electric).

However, the blue badge most ONLY be used if I am going to be a passenger in the car AND I am getting in or out of the car.
So someone can use it to park and come and pick me up, or use it to drop me off. It cannot be used at any other time. To do so is an offence.