I wrote a post a while ago titled Stop and think: invisible access for invisible disabilities. It was a personal narrative of some of my experience with chronic fatigue syndrome. In it I mentioned a couple of accessibility problems that I had encountered repeatedly. So I thought I’d go into a bit more detail about some accommodations for people with all sorts of invisible disabilities.
The overriding principle here is: Anyone you encounter may have an invisible disability. They may not wish to disclose and explain that disability to every single person they meet; sometimes, getting out of the house is hard enough, and it’s too exhausting to contemplate spending another and yet another five minutes explaining and defending their (often quite simple) needs. In addition, they have a right to medical privacy. You can do your bit to make their difficult lives a little easier by considering invisible disability access in the various aspects of your life.
This is in no way an exhaustive list. Many items are based on my own experience, or that of others in the forums I frequent. Add your own!
Individuals:
- If you see someone who’s lost, don’t just point them to a sign and walk off – you don’t know whether they can read it. Give them verbal directions, or offer to show them their location. You don’t know whether the person has minimal sight or can’t read. If they are still completely at sea and you think there may be more to the story, ask if they need more help – perhaps they’ve become separated from a carer?
- Give people a break. The person annoying you may not be drunk, high or wilfully irksome; they may have a movement disorder (like cerebral palsy), autism, an illness affecting their memory or speech or cognition, a mental illness. Protect yourself if need be, of course, but be patient with minor irritations. Realise that the world has all kinds of people in it, and they all deserve access to public spaces.
- Don’t make snarky faux-sotto-voce remarks about how some people shouldn’t be allowed out in public, or about how a licence should be required before people are allowed to breed.
- Offer to help out, quietly and without being pushy, if you think someone has a very clear need. There’s a fine line to walk here; just because someone is walking slowly or has a stick, doesn’t mean they need you all up in their face. But they may welcome a simple offer to get them a chair or to put their shopping bags in their car or take their trolley back to a bay. NEVER, EVER touch a person or their mobility aid without being specifically invited to. EVER.
Businesses:
- Consider accessibility in the business plan and design phase, not as an afterthought.
- If someone wants to deal with you by email instead of phoning back and forth, do it, without arguing or interrogating them. They could have social phobia, autistic, be hard of hearing, have auditory processing problems, short term memory problems, mental illness, or a sleep disorder; none of this is any of your business. Similarly, if someone prefers to deal with you by telephone rather than by email/web contact form, accept that also. Have systems to deal efficiently with a variety of different communication methods.
- Consider agreeing to mail order for mailable goods, even if you don’t usually offer this service. It may be a major and painful expedition to get to your shop for someone with CFS, autoimmune disorders, cancer or a host of other illnesses. Perhaps they’re not lazy and over-entitled; they may have very good reasons for asking if you can put it in a satchel and post it.
- Have seating available for all, not just on special request. Put comfortable, accessible seating (not teeny tiny flimsy chairs) anywhere where someone might need to pause and deal with a service agent. If there is a longish corridor or walkway, put seating here and there along the way.
- If someone discloses their disability to point out an accessibility issue, don’t lecture them on the curative properties of exercise, vitamins, or positive thinking.
- Have a usable webpage offering plenty of information, and one that works with accessibility software. Eschew flashing animations, colour combinations unreadable by those with colour blindness, low-contrast text, mystery meat navigation, or other website sins. Plain text is good. Simple images are good, but don’t convey information via images that isn’t conveyed in text also. Accessible design is good design.
You can find information on web accessibility here at the Web Accessibility Initiative.
- Accessible parking, following all legislation. Consider putting in more accessible bays than you are legally compelled to. Put parking as close as possible to an entryway, and put a trolley bay nearby. Remember that not all people with placards are in wheelchairs; some may be unable to walk very far. Rain and sun protection would be much appreciated! Some people can’t make a dash in the rain, some have severe sun sensitivity due to illness.
- Not everyone with a service animal is blind.
- If you are a larger business (very large store, wildlife park, etc): Have powered and manual wheelchairs available fore hire. Allow bookings so that someone who plans an outing can be sure of access.
- When planning your business setup, consider that some people may have problems with bright lighting, loud noise, strong odours.
- Toilets. Available and accessible toilets are appreciated by people with all sorts of problems. Wheelchair access is not the only toilet-access issue. Consider people with irritable or inflammatory bowel disorders, colostomies, bladder problems. Consider single-cubicle ungendered toilets. Consider changing facilities for people of all ages and any gender who use sanitary protection.
- Consider training and employing people with disabilities.
Educators:
- If someone has good marks and good references, consider assuming good faith. Accept that someone’s account of their own experience is valid.
- Many people with less obvious invisible disabilities may not have identified themselves to the Disability Office, or may not have a diagnosis yet or at all. Considering these people in the course of your work may not be legally compulsory, but it’s a Good Thing.
- A student may not be lazy and rude if they nod off in a lecture; they may have a sleep disorder, CFS, or perhaps they’ve just been up all night with a sick kid.
- Some people with cognitive problems may find some aids very useful. These aids may be irritating when everyone uses them. If you’re banning equipment such as laptops from a classroom, consider that a student may be using the equipment for accessibility reasons. Consider a disabled student’s privacy when implementing and explaining the ban and its medical exceptions – not every student with an invisible disability wants all their peers to know about it.
- Consider hearing and auditory processing difficulties in your presentation. Present information in both oral and visual ways where possible.
- If someone needs accommodations that you can provide, don’t argue with them about their ability or interrogate them about their illness. Work with the Disability Office for simple or creative solutions. Sometimes the tiniest bits of assistance go a long way: for example, I appreciated it very much when a lecturer mailed a marked assignment back to me rather than me driving an hour round trip into the office to pick it up.
“If someone discloses their disability to point out an accessibility issue, don’t lecture them on the curative properties of exercise, vitamins, or positive thinking.”
Holy crap, I *almost* can’t believe that people would actually do that …
“Not everyone with a service animal is blind.”
Sorry to sound so ignorant, but I’m curious, what disabilities are those?
And actually, about disability and education, Liz at Fate Is Chance. Destiny is Choice. has had a ton of fabulous posts about it recently.
I’m not disabled, but I do have a medical condition that required me to miss a lot of work and school (and it is not only invisible, it is embarrassing – I alluded to it in another comment here actually and I’m planning a big post on it soon) to see specialists and have blood tests/scans. I sort of think that people thought I was just skipping, because otherwise I seemed perfectly healthy – I was able to get around fine – especially when I was rather vague about my reasons.
I genuinely didn’t believe it, till it happened to me. I asked for a chair at a local computer store, and was told that (a) people with disabilities bring their own chair, and (b) that some people just have health problems because they don’t try hard enough, and he knows someone without a leg who climbed a mountain or something.
Sadly, I was too flabbergasted for a ‘fuck you’. Nothing like being taken by surprise to shut you up when you’re feeling like crap already.
Deafness, epilepsy, mobility impairments, autism, psychiatric conditions and so on.
There’s a rather neat law enforcement training video here on business access for people with service animals. It’s designed to train police who might be responding to a disabled person’s call about being refused access to facilities, and includes information on those invisible disabilities and information on how to deal with the situation while respecting the person’s right to medical privacy and treating the service animal appropriately.
“If someone discloses their disability to point out an accessibility issue..”
-Don’t dismiss them with “compliments” that they “look too healthy to need that”, or “aren’t like someone in a wheelchair”.
Such responses frustrate their efforts to frankly address acessibility, and are insults reinforcing stereotypes about people both with visible or invisible disabilities (the former are implied to be “really” weak, the latter to not be “really” disabled).
It seems obvious I know, but I’ve got it several times, even from staff at health services!
I’m one of those with hearing issues. It’s not so much that I can’t hear things, but rather that in situations where there’s a lot of noise around me, I can’t distinguish between the relevant noise and the background noise. If I’m in a very noisy place, I have to concentrate hard in order to be able to understand *anything*, and this can get both mentally and physically exhausting. Over the years, I’ve been working on various coping mechanisms, but I do find at times that it’s very hard to live a “normal” life under such circumstances.
So here’s some of my “coping” tricks:
* I try to restrict my shopping to either early in the morning or during working hours, when there’s less people in the shops – particularly in the supermarkets, because they’re all hard surfaces that sound bounces off.
* I choose restaurants carefully – if it’s a popular place, it needs to have a large proportion of soft furnishings and fittings (chairs, carpets, curtains, tablecloths, etc) so that sound is absorbed rather than reflected. This goes about treble for “family” restaurants. Otherwise I’m likely to overload before I’ve even finished the entree.
* I don’t visit pubs or nightclubs. They’re just too noisy, no matter what I do. Concerts, movies, opera, theatre and ballet are all okay, because there’s the accepted tradition that there’s just the one source of sound, and everyone’s going to be listening to that. But a pub or a nightclub is just too much noise, and I overload.
* If I’m starting to get overloaded, I’ll try to get out of the immediate noise. Quite often this means retreating to the loo (in a public place) or into a different room if I’m at a family gathering. If this doesn’t help, and I’m at a restaurant, I’m likely to head outside for a moment, just because the noise level is likely to be lower. A “smoker’s corner” which is both sheltered from the rain and out of the wind is likely to be a great help here.
* If I know I’m going to be heading into a noisy situation later in the day, I’ll take time out to ensure I get a lot of silence earlier (my version of rationing spoons).
* If all else fails, my partner knows how I get affected by these things, and we can always leave early.
Where this really starts to cut at me is if my noise levels get overloaded at work. Given I work tech support helldesk, and that sometimes this can be a very noisy environment, on occasion I’ll have days where I come home from work exhausted from just having had to concentrate so hard to understand the phone calls. Most employers don’t really have a “quiet room” or similar in the average office.
I also have depression and an underactive thyroid, and I’ve occasionally had periods where I don’t need to so much ration “spoons”, as to monitor how many I *am* using. I can tell those days, because I usually write down a list of all of the things I’ve done. The granularity of that list depends on how I’m feeling. What might be “showered and got dressed” one day might well be “showered; washed hair; dried self; dried hair; put on knickers, left leg; put on knickers, right leg; etc” the next. It varies.
outfox:
Gosh, yes! Have you been to butyoudontlooksick.com? The very name of the website is predicated on this dismissive phenomenon. In the About The Author section (the author has systemic lupus erythematosus (SLE, lupus)):
“But you don’t look sick” is part of the “I don’t actually believe you” constellation of reactions.
Thanks for your coping insights, Meg. Do you have any suggestions to people with normal hearing – are there ways in which people you encounter can make your life a bit easier?
I seem have some processing problems associated with the CFS – I especially can’t process auditory input and do something else at the same time, my auditory processing seems slowed in general, and if someone turns away and mumbles I just can’t make out what they’re saying without a colossal effort.
Visual input I’m much better at. So for example, for lectures, it’s strange – if I just try to listen, the words seem to whirl around and not make sense, and unless I tense up and focus very hard, I drift away rapidly. But I can virtually touch type what the lecturer is saying, and then look at the words on the screen, and they make sense, become more organised. I’ve been trying to listen to more podcasts to improve this capability, but sometimes it just seems to use up more spoons!
ts not so much that I cant hear things, but rather that in situations where theres a lot of noise around me, I cant distinguish between the relevant noise and the background noise. If Im in a very noisy place, I have to concentrate hard in order to be able to understand *anything*, and this can get both mentally and physically exhausting.
*Puts hand up*
I was invited to a bar the other night by one of the people at work; He paid; it was sweet and generous of him. But holy shee-it that place was loud. It was a miserable experience. I mean, why is it a “fun night out” when you have to place yourself next to someone and shout? and it’s hard to get in and out of conversations that way.
My only “disability” is hearing loss from too much loud music when young. I predict that as the Gen Xers get that way, which they will do much quicker due to overuse of headphones, the fashion for hard-edged bars will decline and carpets will return!
[...] manifesto on invisible disabilities, like her previous writings on this theme, is [...]
I’m going to add one more: Don’t telemarket or door-knock. Mostly because this type of marketing shits me, but also because I don’t particularly want to use up a spoon getting to the phone or the door just to get a marketing spiel for your charity or political party or shiny vacuum cleaner. You want charitable? Fund some CFS research. Political? Stop de-funding disability benefits. Clean? Vacuum my filthy floor.
Peevecrest out.
I finally found this “posting”…I have CFS/ME and my slow learning of skills, while
a person with CFS/ME is a great example of how the disability “works” (or doesn’t).
I have to use a wheelchair in the times that I exit my apartment. I am homebound
about 98 or 99% due to CFS/ME (my ability to do arithmetic is totally messed up by
CFS/ME, and if I ramble, you know why, same cause). I had allergic asthma since
age 35, and CFS/ME onset at almost 42. But I didn’t need a wheelchair immediately with CFS/ME. So, I have experience as a person with “invisible disability”.
On the humorous side, sort of: when I was single again, not too long after the
onset of asthma, I went to a singles event, to relearn socializing as a “single” person. I wear a medic alert tag: it lists my illnesses with a tel. no. to call in an
emergency. It’s on a bracelet. One evening, during the dancing part of the singles event, held in a Unitarian Universalist Church, and I’m Jewish and it was
nonsectarian weekly event, after the discussion groups (about “relationships”-
more later), a guy looked at my bracelet as we talked and said,
“Oh, I don’t date anyone with a social disease” when he saw “asthma” on my bracelet. I laughed. It was annoying and funny at the same time. I enjoyed the
discussion groups very much, talking about relationships. The acquaintance who suggested I go, had said, “you won’t meet Prince Charming, but you’ll learn to
socialize.”. Well, she was wrong. I had a long term relationship of almost 2 years,
right after I decided that I didn’t need a man. He was a smoker, but was able to
not smoke tobacco when we were together and we never had a problem. He wasn’t looking for what I was and we had a really nice breakup.
After I decided I didn’t need a man to be happy, I met Prince Charming.. . We
have been together for 30 years. I got CFS/ME about 2 years or so (that old math
problem with CFS/ME) into the relationship and he didn’t “run”, as did most of my
relatives and all my friends (fear of the illness; I didn’t have a diagnosis for several years, it was the 1980s). We married after I spent two weeks in the hospital as a
result of CFS/ME insomnia during an escalation. I asked to be taken to hospital.
The hospital didn’t know what to do with someone with CFS/ME, so I got put on a
psychiatric floor, got caught up on sleep and had the severe eye infection treated and vision in one eye saved. My regular dr. was out of town. Much has been written about CFS/ME, and especially good is “Osler’s Web”, by Hillary Johnson,
1995, Crown Press. My mother’s greatest gift to me was reading all 800 pages, borrowing the book from the library (she loved libraries) and apologizing for not
taking the illness seriously. (All run-on can be attributed to CFS/ME. Being a
wheelchair user is a whole other topic, as is having cognitive “glitches” at times.)
Note: I have only been online less than 2 years and found this link via
http://www.notdeadyet.org It’s wonderful to now know that Lauredhel has CFS too.)
PS CFS is the “ps disease” (I named it.). My husband and I married when we were together almost 14 years and had our 16th anniversary a few months ago. I relate to the symptoms in the comments – more at another time. (time for me to get offline and be horizontal, due CFS/ME)