Reinventing the wheel.

[baratron]

More disability crap! Right now I am in bed and close to tears because I am so sick of dealing with it. I'm starting to feel like I should employ a full time enabler/advocate so I can get on with my work unimpeded by having to sort out access stuff.

Remember I said I needed to talk to Birkbeck Disability Office about the compulsory Symposium and my access requirements therein? Did that yesterday and got up today planning to write a lengthy email to whom it concerns. Only to find that I have an email from the postgraduate administrator in the department who has the wrong end of the wrong stick.

"We received a query from [someone] who is PA to [my DSA Assessor] regarding concerns you have about a biennial symposium. There is a biennial ISMB symposium due to take place on 17-18 June, which all students and staff are invited to attend but there is no assessed component."

No! I am not worried about the non-existent assessed component of the meeting! I've been a postgraduate before, I know what these things entail. I am worried about:

1. My ability to get to the meeting in the first place, given that it starts at at 9.55 am. This is a problem for three reasons:
   
   
   1. I find getting up in the morning VERY difficult due to Delayed Sleep Phase Disorder, which means that I typically cannot fall asleep before 3 am. Generally speaking, sleeping pills do not work for people with DSPS because it's not simple insomnia; rather a person's entire circadian rhythms are messed up. Falling asleep is not possible when (e.g.) your body temperature is still within waking limits (firmly 37.1 degrees C), and waking up is not possible when you're too cold (body temperature around 36.5 degrees C). I've been lucky enough to find a sleeping pill that *does* work for me to some degree, but I cannot take it more than once every few days or it stops working. However, it's not a case that I take the sleeping pill and fall asleep at 10.30 pm like normal people. Even with medication, the best I'll be able to manage will be falling asleep around 1 am.
   
   
   2. Given that I'll only get 7 hours sleep if I'm lucky, I will have pain in the morning. Sometimes I am in pain when I wake up regardless of how much sleep I get, but it's more or less guaranteed if I'm short on sleep. My back will hurt, maybe my hips or legs will hurt, if I'm very unlucky my elbows and wrists will be sore too. The pain will likely last the whole day and get worse and worse as the day goes on. The strongest painkiller I have will not remove the pain entirely because a lot of what I experience is joint/muscle fatigue, and only rest and warm baths/blankets can help with that.
   
   
   3. Assuming I manage to get out of bed and am able to walk, I then have the problem of physically getting to central London. By the time a rush hour train gets to my station there are no seats left. Often there is not enough space to sit on the floor. There is no way I can stand for 25 minutes on a moving train and be functional enough for a whole day's meeting afterwards. I have the option of taking a taxi, paid for by Disabled Students' Allowance, but Kingston to Bloomsbury is the kind of journey that is three times slower by car than by train at that time of day - meaning I'd have to a) get up even earlier and b) sit in the taxi getting stressed about being late. Probably my best option is to take the train as usual but enlist someone assertive and able to stand on trains to ask people to give up a seat for me. (Did you know that South West Trains suburban/commuter trains don't even have Priority Seats anymore? I need to shout at them about this, as soon as I've got all my access stuff at college sorted out and have enough spare energy and time). Then I'll get a taxi from Waterloo to college, meaning that I'll only be stuck in central London traffic rather than traffic all the way up.
   
   There is nothing that can be done to help with the above problems. No one can wave a magic wand and fix my circadian rhythms. But I'm mentioning it because that is the background which has to be considered. Mornings remove a lot of my ability to cope. You can assume that I will be tired, in pain, grumpy, and very anxious.
   
   Concerns that the Symposium organisers can help with:


2. Whether I can get into the building where the meeting is being held without having to use a flight of stairs.


3. Whether I can get into the lecture theatre where the meeting is being held without having to use (a) flight(s) of stairs. Considering that we will be going into and out of the building twice in the day, and in and out of the lecture theatre at least three times during the day, I would say I could manage a short burst of stairs (up to 6, maybe?) in total. Beyond that I will need level access.


4. If the lecture theatre is not on the ground floor of the building, I will need to use the lift. Previous experience in UCL has shown that you often need a UCL swipe card in order to access lifts. So I will need to have this arranged in advance.


5. I also need to ensure that there is a women's toilet that is within easy reach of the lecture theatre without needing to go up/down stairs. I don't need a specific "disabled" toilet, just one that does not require the use of stairs.


6. I need to know what kind of seating is available in the lecture theatre. Some lecture theatre seats are too deep for me to sit with my back against the backrest and reach the table. Writing on a notebook on my lap is not feasible because of the inherent back strain. It is essential that there is both a backrest and a writing surface that I can use. If such seating is not available by default, I need to have it provided.

Many of these physical access concerns can be solved by arranging a time when I can visit the building along with one of the Symposium organisers, who has access to any alternative entrances that are usually kept locked. Although UCL is not far, I cannot go wandering into it by myself because I need to make sure that I can get into all of the rooms concerned including the lecture theatre, which will often have classes.


7. Having read the timetable for the Symposium, I am concerned about the apparent lack of breaks between speakers. I can only sit comfortably in one place for up to an hour, and it appears that the morning session will be 2h 15 min. Ideally, I would need up to 5 minutes between speakers to stand up, walk around, stretch, and do other things which are potentially disruptive/annoying to others.


8. If any of the talks are particularly useful/relevant to my project (I don't know this for certain yet as the titles have not been announced), I would ideally need to record them in the same way that I do for my lectures. Some of the speakers may have a problem with this because people often present unpublished work at conferences. I would like a Symposium organiser to contact all of the speakers and ask them for permission for me to record the lecture, emphasising that it is for my own use and I will respect the speaker's intellectual copyright. You should probably also emphasise that it's an audio recording only - some people have thought I wanted to video them! If people will be presenting unpublished work and do not want their lecture recorded, I would need to know in advance so I could get other people to help me make notes. My DSA budget does not currently pay for a notetaker because I have the voice recorder, but I am sure I could enlist friends if necessary.

There is a potential contradiction inherent in items 3, 7 and 8 in that the obvious answer to avoiding stairs and making sure I can have rest breaks is to reserve me a place at the back of the lecture theatre, so I can slip out if necessary without disrupting anyone else. However, the voice recorder that I have requires some degree of physical proximity to the speaker. I usually sit in the front row of lectures. It would be possible to teach someone else how to use it and have *them* sit near the front but an inherent drawback in this is that I press the "index" button whenever something particularly important is said, and someone else would not know which parts of a lecture I would want to find again in a hurry. Nonetheless, it may be the best solution.

Gods. You know, my stomach is actually hurting from the stress of having to write this all out. And I haven't even included 9. The anxiety inherent in attending a large meeting with a lot of people I don't know, any of whom might deliberately or accidentally make a clueless personal remark about my visible disability issues. (Some scientists are not known for their advanced social skills, and sometimes people think they're being friendly.)

Also, I'm mildly annoyed that the livejournal web client automatically updates the time of posting, as I'd like to know for certain how long I've spent writing this. It's at least an hour and a half.

Comments

[brooksmoses]

Argh, indeed.

And I am sympathetically cranky about the aspects of that email that seem to be implying, "Well, it's 'invited to attend' and not assessed, so you could just not come at all." Which kind of misses the point by a distance measured in parsecs.

[baratron.livejournal.com]

On the one hand, I don't expect anyone to be an expert on my needs unless they're me.

On the other hand, said person has not only met me, he has received a copy of my Individual Student Support Agreement. Moreover, he should remember that only a few months ago I emailed him asking for specialist seating for my interview. If I need a chair with lumbar support for an interview, is it too much of a stretch to consider that I might also need a chair with a backrest in lectures?

[firecat]

People don't talk much about how much advance planning is needed for disabled people to go places and do things that are different from what they normally do. This post is a perfect example of all the extra work it is just to determine if you can go to something, never mind actually doing it.

You didn't ask for advice, so ignore this if it's not wanted.

I wonder if it would be an option to ask the symposium organizer to audiotape the speakers for you, so that you wouldn't have to travel to the conference.

[baratron.livejournal.com]

Yes - the main reason I made this post public was to provide a publicly-linkable version of the kind of planning that disabled people need to do when considering attending events. Indeed, if I was more disabled than I am (sensory impairment, non-ambulatory), the list would be far longer.

I have been incredibly spoiled in my social life in that most of the people I know are reasonably clued up about disability, and events such as BiCon have a long history of providing access, with lots of ideas within the community. The sheer amount of effort I've had to put in to be able to attend college has come as a shock, especially considering I know Birkbeck is one of the best institutions in the country for access.

If only taping the speakers was enough to feel like I'd attended the lectures! Unfortunately, scientists have a great tendency to point to graphs and other data, and talk about them in such a way as to be meaningless without having seen the overhead/Powerpoint slide :( I have no idea how most of the speakers I've seen recently would be able to adapt their style for a visually-impaired student or colleague.

[nitoda]

I'm glad you posted this. It is educational for many of us to see just how taxing it is for you to get your access needs met in an educational context. And quite shocking, too. ::hugs::