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 helpAs 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 supervisorMy 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.
Seminar/course organisersThe 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 studentsThis 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
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 experienceDuring 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.
Conferences: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 letterI 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.
AccessIf 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.
ParkingEven 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.
TimetablingAgain, 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.
AccommodationCheck 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 WebsiteFinally, 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.
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.