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| 2007-05-04 16:13 |
| Stop and think: invisible access for invisible disabilities |
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| disability |
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This is my first personal post about being sick. A "coming-out", to some of my online friends. And a whole lot of elaboration, for those who know I'm sick, but don't know the details. It's taken me ages to write, and I haven't re-drafted it: here are my musings, in the raw.
Becoming Sick
I have moderately severe chronic fatigue syndrome, or something that looks very much like it. I first got sick two and a half years ago, quite suddenly. After a few months of feeling just a bit off, not bouncing back with my self-prescribed generic good-food-and-fun-and-exercise cure for tiredness, I suddenly crashed. Over the course of about two weeks, I crashed hard. I became unable to work, and daily living was full of what suddenly seemed to be insurmountable obstacles. I dropped things, felt off balance, walked into things, had large-muscle twitches, thermoregulation problems, I was suddenly blanketed in pain. My short-term memory came and went and I couldn't concentrate on more than one thing at once, a huge change in cognitive function for me. Most noticeably, activity didn't pick me up like it always had in the past. Before, if I felt a little off I could go for a bike ride or a swim or a choir rehearsal or a night out dancing, and feel invigorated by it. After, I'd walk a couple of blocks then flump down absolutely exhausted. This was the first time I'd ever felt like this, and it didn't make any sense! I felt happy enough, apart from being terrified that there was something awful wrong with me (lupus and MS were high on the differential at the time); there were no clinical signs of depression or somatisation.
This didn't stop the first specialist I went to, a neurologist, insisting that I must must must be depressed, of course. I was a woman. With a toddler. Of course I was depressed! Just deluded and in denial, as hysterical women so often are. The abnormal blood tests and lack of clinical signs didn't register in this simple equation: ovaries + fatigue = probably depression. Ovaries + fatigue + motherhood = certain depression.
[Lots more after the cut.]
Thankfully, I got past that, though not without a fair bit of righteous annoyance on my part. Depression would have been just fine by me as a diagnosis. I know how depression is treated. I know it can be managed, if not cured. I don't feel a stigma about it; let's face it, many, perhaps even most, of my close friends have had depression. But it's a positive diagnosis, not a wastebasket one. Lesson one: no clinical signs of depression means no depression, people.
I found a GP with a clue, and stuck with her, so happily I'm not without competent, non-judgemental medical care. Sadly, not all people with CFS are in that position.
Discovering Spoon Theory
I first learned about spoon theory when I was poking around reading up about lupus. Christine Miserandino, a person with lupus, was trying to answer a question by her friend. The friend had asked her what it was like being sick - not about her symptoms, but about what it was like being her. Stuck for a metaphor, Christine grabbed all the spoons off the table, and explained that every day, she had a very limited number of spoons, unlike a healthy person who has a near-unlimited spoon supply. Each spoon stood for one chunk of activity. The friend started out with 12 spoons, and had to run through a day, giving up one spoon for every thing she did: including getting up, dressing, showering, and so on. The friend was down to half her spoons before she'd got to work in the morning - and the light dawned. It dawned for me, too.
Every day, every moment, is a tradeoff. Every piece of activity has to be a conscious choice. Normals never have to choose between cooking and cleaning up, between showering and playing with their kid. Never have to think ahead to the weekend, and say "I'm having lunch with a friend on Saturday, so I have to keep Sunday completely free to recover." Spoons are always my first thought when planning out my life.
An example: Today I changed the bedding. That's a fair chunk of spoons. I started planning it a couple of days ago, when I knew the bedsheets had to be changed. I have learned from experience that on a bedsheet-changing day, I'm not going to be able to get much other vertical time once essentials are accounted for (personal grooming, lunch, picking my kid up from school). I figured Friday would be a good day. We could have our weekly takeaway dinner, so I'd be able to steal the cooking spoons. And Friday Night is Movie Night for the lad, so our evening will consist of hanging around on the bed, watching something with dinosaurs and munching popcorn, a low-spoon activity. I also checked forward to our Saturday plans: no excursions, so I can use up all my spoons on Friday instead of keeping some in reserve.
So I planned a couple of days in advance; I just changed the sheets; and now I'm horizontal. And wondering, just a little, how I'm going to get the energy to do school pickup today - maybe I'll drive the block to school to save those couple of spoons for tonight? I'm not sure yet.
I used to spontaneously say "Oh, I'll just quickly change the sheets now", somewhere between getting home from work and going out for a night on the town. No more. Life has changed. It's taken me two and a half years of being sick to get to this point of juggling my spoons relatively effectively. As recently as six or eight months ago, I was still on the push-crash roller-coaster, using up all my energy on one activity without thinking forward to the next, and spending days on end crashed out from not pacing thoughtfully.
Some people who have never been through this view the spoon-rationing as "giving in" to the illness. I guess these are the same people who subscribe to the contorted, fucked-up cognitive-behavioural causality model of CFS: they think that I'm sick because I've convinced myself that I'm sick, and that I have limits simply because I'm spending my hours and my days working within my limits. What they didn't see was the many months I spent denying that I had limits, busting them, and paying out for it. What they are looking at now is survival, not surrender. I'm gleaning the positives from an unpleasant situation; I'm eking out a life both happy and worthwhile, from the boundaries I'm stuck with - just like anyone else on this planet does. I don't need pity, but I do need consideration.
Two Things To Understand About Me
Before I leave Useful CFS Links, I want to drop you another link: the Open Letter to Those Without CFS/Fibro. A couple of these "Please understand"s really resonate with me:
Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. I may be tired. I may be in pain. I may be sicker that ever. Please, don't say, "Oh, you're sounding better!". I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.
Please understand that I can't spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn't mean I'm not trying to get better. It doesn't mean I've given up. It's just how life is when you're dealing with a chronic illness. Contemplating Disability: What Counts?The line between "chronic illness" and "disability" is a blurry, wobbly, contested one. Many people seem to think that "disability" is about having a mobility impairment and using a visible mobility aid. People in wheelchairs "count" as disabled; people with invisible disabilities don't. Some people consider "disability" to be something a person was born with, or acquired catastrophically and traumatically. Considering the idea that I'm disabled has been a difficult one for me. Though I've worked hard on combatting cultural devaluation and misunderstanding of disability and disabled people when it comes to others, for some reason turning the disability light on myself has been a challenging step. It took me nearly two years of being sick before I applied for a disabled parking permit, and I cried at the doctor's appointment getting the parking medical form filled in. I might intellectually know that it's not "surrender" to accept the D-word, but gosh, it feels like it. Why? PassingSo I pass. Most of the time, I pass. I've used the parking permit maybe four times, because I don't want people looking at me, staring because I'm not in a wheelchair, conspicuously inspecting my car looking for a placard, heckling me and asking what my diagnosis is, just as that TV current affairs show encouraged them to do last year. I go to social events, and pass. Sometimes. There are some places I just can't go, if there's nowhere comfortable to sit or lie down, or if there's no hard shade (I'm sun-sensitive). I find a chair or a picnic rug, and sit, and chat, and Don't Mention The Illness. People I don't know see me sitting still and asking friends or family to bring me a drink or fetch me something I need, and I worry about them wondering why I'm so imperious and lazy. But I work hard on not caring. Passing is exhausting. So is disclosing, coming out. It all uses emotional energy - "Will they think I'm faking?" "What words will I use to explain?" "What if they don't believe me?" Invisible Accessibility for Invisible DisabilitiesThe first time I truly realised how clueless people are about disability and access was at a local Apple dealer. We needed to do a bit of paperwork, and I found myself standing at a desk, with the computer guy seated on their other side of the desk. I looked around for a chair, and couldn't find one. I asked "Could I have a chair, please?", and was told that they don't have any chairs for customers. "I'm not feeling well," I said, "Could I please have a chair while we do this paperwork?" and was again rebuffed. "This isn't great disability access", I tell the dealer. He looked at me as though I had two heads, and snapped, "Disabled people bring their own chairs." I explained that not all people with disabilities use wheelchairs. I was then subjected to a lecture about how sometimes disability is all in people's heads, and if only they would get out and about more, they wouldn't have a problem. What an monumental arsehole. I've spent the last nine years getting a Bachelor of Arts degree. The last two years I've done in off-campus mode, though my university doesn't officially provide such a mode. This is thanks to several absolutely fantastic lecturers who were happy to work with me, discussing tutorial material by email, accepting emailed PDF assignments, allowing flexible deadlines. I thank those people deeply. And the lecturers who snarkily refused to contemplate flexible delivery can nick orf. I thank my wonderful partner, who fetched and carried the books, videos and paperthings that couldn't be transferred electronically. I thank the librarian aide who helped me out with items for pickup, and I thank the Student Services Office, who somehow find their way around the convoluted university systems. Most of the time. Between going into off-campus mode, I spent a short while being sick but attending classes. This was before I got my ACROD permit, so I needed to apply for a university disability parking permit and library accessibility pass. The application system was so ridiculous as to be laughable, and my feedback about the system, as far as I know, was icily received and promptly ignored. I present it here for your amusement: How To Get A Uni Parking Permit, for People With Chronic Illnesses And Mobility Disabilities. (Background information: the campus is fairly spread out, about a kilometre from end to end. This is taking place before I have a permit, so I can't park close to the buildings and offices.) We started at Student Services, not too far from the south end of campus. Having made this appointment specifically to get the access passes, I thought I was going to just sign something and pick them up. I don't have a huge number of spoons this day, and just driving to uni has been pretty tiring. But no. I meet the Disability Officer, and she says a couple of things, then says we need to go up to the Parking Office. At the north end of campus. "What?" I say. She says "We need to go up to the parking office." "What the fuck?" I am tempted to reply, but I end up just doing the two-heads-stare. She twigs, and says, "Oh, you can drive, I'll walk and meet you there." So I make my way back to my car, and drive up to the Parking Office, try to find a space (paid only, for non permit holders), and go to the office. There's no seating, no low counter; you must stand at a high counter to get served. Exhausted, I sit down on the floor while waiting, and bystanders start backing away from the crazy person. Getting up, when the time comes, is a struggle. The parking permit is sorted. I'm wondering, at this point, what happens with the library permit. "Off we go", she says, "We need to go to the library now." I take a breath, steel myself, and drive back down to the library, in the middle of the campus. Parking is a fair way from the library entrance, and there is a large flight of stairs to get up. Ramp access to the library for non-permit-holders is around the other side of the huge building, and I don't have the energy to walk around there. So I wait, again with no seating, outside the locked disability access entrance for the Officer. We meet, and go in. There's a service counter on the library ground floor where they dispense disability access cards. You guessed it: no seating, and a high counter, standing room only. I ask for a chair, and the service person disinterestedly points me to a corner of the next room where there is a stack of chairs. I am in spoon deficit by now, and have a choice to make: do I stand at the counter, or do I go and get the freakin' chair myself, so I can sit? I don't even have the energy to go into an explanation of why there should be seating, and how completely inappropriate it is to tell someone at a DISABILITY SERVICE COUNTER to get their own damn chair. I get the chair, and slump down onto it. There is a wait, and eventually a card eventuates that gives me access to the locked elevator system in the library, and the library room with disability facilities in it, including various bits of accessibility equipment, comfy chairs, and a mattress to lie on. I have a point, I think, to all this rambling, and that is: Stop and think. Use your brain. Encourage people around you to use theirs. Get past the wheelchair model of disability access. Just as people who use wheelchairs shouldn't have to go to the back of a building and use a freight elevator, people with invisible disabilities need to be considered when planning buildings, access, and service provision. People with invisible disabilities should have equal access BY DEFAULT, and not have to spend their time constantly educating people about their illness in order to get through the day. Businesses need to do some basic staff training about the variety of invisible disabilities. Consider the whole range of somatic, sensory, and neurological issues and atypicalities, from CFS to cancer to dyslexia to deafness to autism to mental illnesses. Different people have different access needs; mine are really very simple, and start with access and seating. Don't lock the elevator. Don't make people walk the long way around to get to an elevator or escalator. Put in lots of chairs, benches, a low service counter for chairs and wheelchairs and little people, install an armchair in a corner for people to take a moment. This goes a long, long way to letting an ill person access your facilities. Oh, and don't tell them it's all in their head.
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*hugs* Thank you, I enjoyed reading about your perspective on how society treats people with disabilities. From my own experience working in that sector, I agree with you...it takes a huge amount of energy to get people to understand why the environment in which you are in is not access friendly.
Personally I wish all houses were built with these ideas in mind, with the premise that at some stage in our lives we will all need better access to everyday things (bathroom, kitchen, etc). The same applies to public buildings.
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Heyup, I'm one of Bat's friends, and I may know you, but can never tell from LJ. However I always enjoy reading you on his friends list. I felt I needed to respond to this one, because I do know exactly how you feel. About 16 years ago I had glandular fever followed by post-viral meningitis (ow!) and developed CFS as a result (my theory being my body decided to take the next couple of years off). It was astonishingly debilitating, especially to someone who had previously been very active. My then-partner, alas, was rubbish.
There were things that helped; eating meat, vitamin B injections, seabathing in the shallows on warm days, but my doctor told me that basically it was all guess work and that they could give me some things that would help while my body slowly fixed itself up; I just needed to accept that some days would be spent asleep for the next while. My friends were brilliant, and that made a huge difference.
Of course, there were no kids for me to take care of, so I could just sleep when I needed to. I've spoken to a lot of people over the years who weren't able to sleep as much as they needed to, and it took them much longer to come out the other side.
The good news is that for practically all the people I know (me included) there is another side. One day you wake up and feel a bit better, of course you'll overdo it that day, but the next day you won't be as flat as you thought you'd be, then the day after you'll be a bit better again. The two years later you'll be cycling 200km a week and looking FANTASTIC for a 28-year-old. Of course, then you'll get run over if you're in Sydney and a whole different palaver starts, so perhaps stick to the stationary bike or move to Canberra ...
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Yes, yes, yes, yes and yes.
I've got a few chronic illnesses. One would be bad enough, but sometimes the combination can be a pain. Many days are good - so good that I feel normal and can do whatever I want, but some days are just horrific. Sometimes, people don't get why I'm tired, or why I'm curled up in a ball on the couch, or why I suddenly can not do something I said I would do.
My biggest pet peeve is public transport. When my pain is bad, when I am tired, I have to sit on a seat - I don't have enough spoons to do both. Once or twice, I have sat on the bus in the seats reserved for disabled people - only when there are no other seats available. On each of these occasions, I have had people stare at me as if I am lazy. I've even had people ask me if I really need to be sitting.
Interestingly enough, at one stage, the Disability Liaison Office at Monash University was on the first floor of a building with no lift in it.
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Same with QUT - actually, wait; there's a lift; the office is just a fair way from it. And I think I've mentioned you have to go around several sharp corners to get into the DO's office. Just great for wheelchairs.
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"Once or twice, I have sat on the bus in the seats reserved for disabled people - only when there are no other seats available. On each of these occasions, I have had people stare at me as if I am lazy. I've even had people ask me if I really need to be sitting."
And that's precisely why I never ask people to stand for me on the bus when I'm heavily pregnant (or, as now, when I have 11kg strapped to my front in the form of a baby!) and thus 'entitled' to a seat. I never know who might need the seat more than me. Of course, it annoys me because I doubt all 30+ people occupying the seats need them more than a pregnant/babywearing woman, but such is life, and I am capable of standing, it's more difficult for me than some people. It's also easier for me than some people, and I try to remember that.
The university I attended - Curtin, which may or may not be the one Lara's referencing - was pretty awful for disability access, considering I felt like I was banging my head against a wall trying to get around there with a baby in a pram.
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i had no idea; i thought you were functioning much, much better than me!
one of my "horrible invisible disability moments" -
get on bus.
show disability card for discounted ticket.
bus driver doesn't take my money. instead he pauses, looks up at me, and says loudly, "HOW'd ya get THAT?"
I was silent.
He was still.
I was silent.
He stayed looking at me.
I said "Try going mad."
He said loudly, "No [something i forget], I was just curious!"
Yes, there was someone waiting behind me; yes, there were other people on the bus. I was hideously upset and embarrassed; I still wish I'd thought to take his number and report him.
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| (Anonymous) |
| 2007-05-08 05:18 (UTC) |
| (no subject) |
He said loudly, "No [something i forget], I was just curious!"
No offense?
I'm always amazed at people who use "no offense" as license or forewarning that they are going to be or have been really offensive.
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yep, i have a feeling that was it. either 'no offense' or 'i wasn't trying to offend ya'.
it's so socially lazy.
![[info]](http://l-stat.livejournal.com/img/userinfo.gif) lauredhel: I didn't think it was a good comeback. i thought it was awful, and public, and i hated revealing it, and i never, ever want to be in the situation of having to tell some loud inquisitive dick i've got a socially stigmatised disability ever again. next time - should there be one - i'll simply ask for his name, and either get off the bus and make a complaint in writing, or ring the city council in front of him to file a complaint.
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| lauredhel |
| 2007-05-08 11:17 (UTC) |
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Definitely. I think I meant "good" in the sense of "effective"; highly likely to result in someone shutting TFU. But definitely not the only effective approach. It sucks that this dick forced you into the position of feeling you needed to disclose in the first place.
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Congratulations for writing your story, I know I've asked before and you've given me the 5 minute version. Going public is hard, but the message is important. Thanks.
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| lauredhel |
| 2007-05-05 08:41 (UTC) |
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Ah, and there's a lot more, but I haven't written it yet. This will do, for now. If I'd told this story when we were last together, we wouldn't have had any time to talk about Fun Stuff.
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| youxu |
| 2007-05-05 00:58 (UTC) |
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I thank you for writing this post--it opens another window to my narrow-minded world. I admire your courage, and your intelligence of dealing with such illness. I bless you with all my heart for all the happiness you deserve. Hugs!
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| mama_bec |
| 2007-05-05 00:59 (UTC) |
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i can see my husband going through a LOT of these same issues. he has asthma, multiple severe food allergies, and crohn's disease. i think it's ridiculous how people assume that the only disabled persons are those whose issues are plainly visible, and i've gotten in more than one discussion in the hopes of educating someone. (the most memorable one was with a baker who couldn't seem to grasp how threatening and dangerous food allergies are. he tried to compare it to his wife's MS; in no way do i diminish her situation, but they don't really seem very similar to me.)
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| lauredhel |
| 2007-05-05 08:44 (UTC) |
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Oh, severe food allergies, do NOT get me started. Every time there's a thread anywhere on school peanut restrictions, I brace myself for the vacuous twitlings who boast about sneaking peanuts into their kid's lunchbox because the poor pweshus refuses to eat anything else and will waste away to nothing before their very eyes if they don't have access to their choice of food 24 hours a day.
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| (Anonymous) |
| 2007-05-05 06:22 (UTC) |
| thanks for posting |
Hi lauredhel,
thanks for this post, I appreciate your honesty and courage to 'come out' with this online. I also appreciate the insight into how you have to manage your energy, you seem to be able to pour thoughts into online writing and communities and this does give an impression of boundless energy.
I was chatting with a woman with coeliac disease as a wedding last year and she said that while it's terrific that there is so much gluten free food available these days, there are a lot of people around that claim 'intolerances' to wheat or gluten. So bizarrely people who run restaraunts are very used to responding to these requests but don't take it as seriously as they did in the past. She finds people rolling their eyes at the suggestion that she can't eat wheat as if she is somehow putting it on.
She was very very sick for ages (fatigued, violently ill and of course iron deficient) and all the drs she saw were convinced that it was psychological. One very sensible gastroenterologist did take it seriously thankfully.
I explained to a woman I know a few years ago about coeliac disease being a severe intolerance to gluten and she immediately decided that she had it, because 'her naturopath told her she shouldn't eat wheat'. I'm sorry but ANYONE who goes to a naturopath should expect to be told not to eat wheat and dairy. But that is not coeliac disease.
I can imagine that there is a similar phenomenon with CFS, with people deciding that this is what their diagnosis is without really understanding the debilitating condition that it really is? I wonder if that's where the "it's all in your head" thing comes from? Anyway I am just speculating...
I hope that you are feeling happy that you have disclosed, I think from reading the comments that you are amongst friends.
I don't have a lj id, you know me as Fiona Y and i read your journal regularly.
best wishes
Fi
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| lauredhel |
| 2007-05-05 08:38 (UTC) |
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Hi Fi! If you grab an LJ account, you'll also have access to the f-locked posts. (No need to actually _blog_ anything, just friend me and let me know.)
It's true that a few people diagnose themselves. Sometimes this might be because those people have some sort of issue unrelated to CFS, and sometimes it's because they don't have access to competent care and don't have any choice. Either way, however, why should "you must be lying" be the first reaction? Some people diagnose themselves with cancer, too, but that doesn't mean that a random person's instant response to someone who mentions having cancer should be that they must be deluded or malingering.
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| bardiegrub |
| 2007-05-06 03:20 (UTC) |
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I used to get so pissed off with other people telling me what was wrong with me and the simple thing I could do to get better. One guy told me I was just breathing wrong. *speechless with rage*
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| lauredhel |
| 2007-05-07 04:17 (UTC) |
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I'm punching virtual walls on your behalf. You don't want to know how many people have told me about the wonders of vitamins and exercise and sunlight and otter's spleens.
This is where I'd amend the Open Letter, because this entry doesn't quite work for me:
"If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with CFS then we'd know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with CFS, if something worked we would KNOW.
If after reading that, you still want to suggest a cure, then do it, preferably in writing, but don't expect me to rush out and try it. If I haven't had it suggested before, I'll take what you said and discuss it with my doctor. He's open to new suggestions and is a great guy, and he takes what I say seriously."
I think I'd shorten it to;
""If you want to suggest a cure to me, don't. No really, don't. DON'T. Isn't the weather nice today?"
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| (Anonymous) |
| 2007-05-06 09:34 (UTC) |
| Re: thanks for posting |
Hi again,
just adding that I TOTALLY don't think it's legitimate that people get a "you must be lying' reaction. This poor woman with coeliacs disease was so annoyed by people thinking that she was in some way putting it on. Completely ludicrous and insensitive way to approach it. I just meant that there is a bit of a phenomenon with some syndromes for them not to be taken seriously, not only by the medical profession but by society because of the nebulous and uncharted nature of them and I wondered if it was similar with CFS. The name after all implies that you have to be "chronically fatigued" when really what you are describing is a debilitating breakdown of lots of (i'm guessing here) central nervous functions. I don't begrudge anyone that self diagnosis though, just speculating really.
cheers Fi (will get that lj id soon and read your old posts, thanks)
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| fimail |
| 2007-05-06 11:29 (UTC) |
| Re: thanks for posting |
"If you grab an LJ account, you'll also have access to the f-locked posts. (No need to actually _blog_ anything, just friend me and let me know.)"
thanks have done
Fi
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| lauredhel |
| 2007-05-05 16:28 (UTC) |
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You would think, would you not, that it would be fairly obvious that anonymous-comment cure-spamming is unwelcome on a post like this.
Furrfu, people suck sometimes. Baleeted.
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*hugs you*
I wanted to leave a comment when I read this yesterday but I actually got really freaked out. It brought back a whole lot of bad memories, as you might imagine. Our stories overlap in so many ways, from the bad uni experiences to the wonderful supportive partner :) I remember the days when the only thing I could accomplish was the walk from the bed to the toilet. I can only hope that things get better for you, as they mostly have for me.
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| lauredhel |
| 2007-05-07 04:19 (UTC) |
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Yikes, sorry to trigger all that. Did you get things figured out at uni in the end, or was it all difficult? I had a couple of terrific lecturers who were really helpful with going to external study mode - they were great.
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I remember they held a special orientation day for students with disabilities and medical conditions. They gave us lots of useful information about the different people who could help us and how to sign up for all the services. Then I spent the next week hauling myself from one end of campus to another, trying to meet up with all these people. I suggested to the guy in charge that it would be more useful to have all the people and sign up sheets *at the orientation day*!! He seemed amazed by the idea.
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| lauredhel |
| 2007-05-08 11:25 (UTC) |
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Aren't they supposed to have some sort of extensive training on these things? Sometimes it seems to me as if they just hauled random people off the street, gave them a trifold pamphlet to read, and left the cluestick be-cobwebbed in a forgotten back room somewhere.
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| lauredhel |
| 2007-05-07 17:40 (UTC) |
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Afterthought: speaking of uni's Student Services: this is the department whose phone-answerer, which, when asked where a breastfeeding student could pump milk on campus, suggested the Guild toilets. And was thunderstruck when the suggestion was rebuffed.
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| lunachele |
| 2007-05-07 17:50 (UTC) |
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Brava from a fellow invisibly disabled person who has been quizzed about her medical history by strangers one too many time, and thrown off public transportation for using a service dog (now unfortunately deceased) while "looking normal". I'm in the USA, and access is just as problematic here. There is a sad lack of education about invisible disabilities everywhere, it seems.
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