Sometimes I have to just shake my head and walk away. I have been discussing something which involves a hotel. I've attempted to stay there before, it was a horrible experience. They didn't have 'real accessible' rooms even though they book them as accessible. They had no provision for disabled parking. Several of the event rooms were up stairs, served by an elevator that did not work. The entire venue was covered in thick carpet and their attitude very nearly brought me to tears. Having been a real person with a disability who had real personal experience with a place, one would think that I would be seen as the resident expert on the place.
However in the discussion, even after I meantioned my personal experience there. Someone said, 'I can't imagine that hotel isn't wheelchair friendly.' And that was the end of that. I shake my head at the fact that my voice, my experience is shut out because some ablebodied person thinks that they know better. Even when they have not A)spent time in a wheelchair to learn what wheelchair friendly means B) been to the place in question to check it out.
I've run into this phenomenon a number of times, Able Bodied people telling disabled people that our experience of reality is not 'evidence'. That they know better. And it freaking annoys me. The discussion continues, I grit my teeth and outlined a few problmes I've expereinced there.
Have any of you, been told that your experience was wrong. Parents have you be contridicted about facts that you 'know' about your children, Others experiencing the myriad ways of membership in the disability community ... has your voice, your your experience ever been questioned by someone just because they could. I'm curious, is this a common experience.
Unfortunately I think this is a very common experience. It's quite typical for people with Ehlers Danlos Syndrome to be diagnosed later in life, and also that we commonly 'look well'. I'm not sure if it's that combination which means so many people with EDS are labelled as attention seeking whiners and everything they say about their condition/experience disbelieved, or if it's a wider problem that's simply amplified in EDS'ers.
ReplyDeleteI received a phone call from an estranged family member a couple of days before Xmas to inform me it was time to stop pretending I had anything wrong with me. Sadly that's the prevailing attitude in my family, which if people acknowledge it can be dealt with and moved on from, but for complex reasons that just never seems to happen. I don't believe my family experiences are in any way unique.
You might like the Bog Off series on my blog about so called 'accessible' toilets, it's turned out to be a great way of demonstrating just how far from 'accessible' so called accessibility is, and as it's all in photo form non disabled people can get a better understanding of why things are a problem
Best wishes to you and Joe, Bendy Girl Xx
I work with elders, and have heard people (including professsionals and paraprofessionals who work with elders) tell clients "you don't mean that" or later to say about a client "well, she doesn't really understand.." as ways of diminishing/ de-valueing the experience of the client. Same thing happens to kids....
ReplyDeleteit's a way for those w/ power to minimize the experiences of others who are 'not like' them.
Yes--I worried about whether one of the kids' events would be accessible in a high school auditorium I hadn't been in. Another parent (and teacher) said in a terse and firm way that of course it would be because of ADA. ADA. Now that's not my experience with school facilities at all; our elementary school didn't even get an accessible restroom until recently and at our volleyball practices and other school events the accessible doors are left locked. Her husband has a PhD in PT and in his job works with patients in wheelchairs every day, so one would think they would know that inaccessibility is the norm despite the law. But yeah, of course I can get in and attend because of ADA.
ReplyDeleteAlso, I've always called doctors' offices and other places in advance to find out about accessibility, whether they've had a power wheelchair or scooter in there before, etc. So then I feel pretty angry when the chair won't fit into the exam room AT ALL. The last time when I was told, "well, it won't fit," my husband said, "but it's supposed to." And I had called in advance!
ReplyDeleteunfortunately, this phenomenon crosses all lines. I think it is an inherent personality flaw in some people and that flaw then gets applied to anyone and everyone they don't agree with. I call it knowitallitis.
ReplyDeleteDave, this is one of the major causes of stress we have. We've had clashes with teachers, EAs, principals in the Thames Valley School Board who think they know better or are the experts on our son. We've talked to MANY other parents with children with disabilities and they've experienced the same thing with the school board. Generally people either think A) they do't have to accomodate because he doesn't "fit their mandate" B) our kid is just a brat who should be locked up C) we the parents are just assholes trying to make their jobs difficult and should accept anything at or below par D) We don't know what we are talking about because we aren't experts.
ReplyDeleteThose with disabilities and their caregivers ARE THE EXPERTS. If something is not right - it means it is not right. If we experienced something it cannot just be shrugged off. AARGH indeed
This is far more than common - this is constant. It is the TAB assumption that their definition of reality is true and complete that perpetuates on-going maintenance and tolerance of barriers. If they ever really "got it" - they would have to acknowledge the fact that the barriers are very real, very discriminatory and very much in need of removal.
ReplyDeleteI meet this constantly. People even pay good money to get my technical advice and then somehow deny the information that I offer. You are touching on very deep seated issues...
(Wish I had a google account or something so that I didn't have to post anonymously. I'll get that fixed soon).
Thanks for your writing - I read your blog regularly.
Are you kidding me? I get informed that ADHD doesn't exist. And I have a formal diagnosis.
ReplyDeleteIt can be difficult, as an able-bodied person, to find appropriately accessible locations for events that I am running. I don't know, just looking at a place, if it will be easily navigated by a scooter or a chair, and sometimes staff can't tell me more than whether or not they've had people with mobility aids as patrons in the past. So sometimes I don't quite make the grade - and at such times, I prefer being informed politely that the location wasn't quite as good as I'd hoped (rather than being sniped at for trying my best).
I even had the "privilege" of hearing a psychologist inform a mother that Ritalin doesn't cause violence. Which it doesn't, unless you're dealing with a young autistic child with limited communication skills - if the medication makes him feel like crap, or it's increasing his anxiety levels, he's going to be violent.
Oh, and then there was the time someone working with one of my clients said, "of course she doesn't wear her seat belt in the van, she's autistic." Like that's a reason not to try to teach the child to keep her seat belt on or something. (IMO, it's more of a reason to teach her to wear her seat belt.)
The ignorance of people is astounding sometimes.
Constantly.
ReplyDeleteI once attended a conference where a woman kept flashing her camera around me (with photosensitive migraines) and a friend (with photosensitive epilepsy). After she had once already sent my friend into a grand mal seizure with her damned camera. And she just kept doing it and doing it, first insisting it was okay and later out of clear spite. Even though she knew my friend could die from the severity of her seizures. And somehow we were the bad guys for speaking out.
Trying to explain to an autism expert (not) that I could not handle fluorescent lights, could not talk to more than one person at once, and needed a cognitive interpreter to help me communicate. And of course later being told no autism expert could be that clueless.
And with joint hypermobility and other stuff, don't get me started. The list goes on and on. And everyone always wants to believe it was anything but prejudice that caused the incident in question.
ately! If I dare dream my daughter can do something, I am labeled as an "unrealistic parent who does not accept her daughter's disability!
ReplyDeleteOh, yes, it's common. Able-bodied people are constantly reporting that such and such a place must be accessible - after all, they saw a grab bar or a sticker with the little white wheelchair guy in the blue box somewhere. The fact that the door is 28 inches wide or that there are three steps in front of it somehow escapes their notice. And why shouldn't it? They don't have to worry about this stuff.
ReplyDeleteBut it cuts both ways. I'm in the process right now of arguing with an organization that thinks that if it rents a restroom trailer that I can get in to (but which is not completely ADA compliant) then we're golden. No, we're not, because I am not the be-all and end-all of disabled people. That's why there are architectural standards for accessibility.
More than common indeed - endemic I would say, and certainly world wide. That might make it pandemic.
ReplyDeleteFrom my own experience with a son with Down syndrome, and from talking with thousands of other parents, I know that denial of and outright denigration of the expertise of parents about their own child is one of the most frequent causes of frustration (although there are many others!).
I'd like to think it was bleedingly obvious that we know more about our son, are more interested in him, and have committed to acting in his best-interests life-long .... but apparently it isn't.
I do sometimes ask people if they are seriously suggesting that I am either lying or ignorant, but of course that can be interpreted as defensive, or as others have said, "in denial". That denial would have to be a pretty powerful force, wouldn't it?
I do think that sometimes professionals are threatened by parental expertise (their own insecurity?), but it is also disappointing when you encounter it from other parents too, and sometimes you do.
Dave, you might be sorry you asked!
Jill
YES. Having my experience invalidated like that is absolutely my biggest pet peeve. And it hurts the most when it comes from a friend. When I'm trying to share something that happened, something that bothered me, and they brush it off, tell me it was no big deal, tell me I misinterpreted. Can't stand it.
ReplyDeleteBut I'll tell you how it's helped make me a better person.
I'm a middle school ESL (English as a Second Language) teacher. My students come from many countries, most of them from Mexico. And I finally made the connection between my experiences and theirs... MANY times, I've seen kids trying to tell about being treated differently because of their race. And as teachers, our instinct is always to try and make it go away. "No, that wasn't racist; what really happened was..." I admit, I've been guilty of it a couple times. And not always because I refuse to believe there was a race issue; sometimes I guess I'm just trying to protect them. But I finally realized how ridiculous that is. Pretending that race issues don't happen doesn't protect anyone; it just invalidates my kids and perpetuates the problem. Now I really try to listen to every concern, and validate their experiences and feelings. I don't have to sugar-coat things for them. They live in the real world; they know how it is. When we can just talk about it, it's led to some much higher level conversations, deeper relationships, and learning experiences for all of us.
I must be getting old and even more impatient, but I now cut to the chase with some education/health providers and tell them up front that I am the expert/case manager if they want to understand the effects of my son's brain injury. This is because I am the one who does the all the therapy, personal care, extra education at home (because schools don't get digital technology), research into learning tools, complementary therapies etc. Some accept this readily, some nearly fall over at their perception of my arrogance :)
ReplyDeleteyes! I find it even worse with doctors who we have never dealt with before....I have the rest of ours "trained" LOL! But I can't tell you the number of times I tell them something isn't going to work, or try to give them advice on how to approach my son's medical issues, they do what they want and when what I predicted comes true, they come back with a sacchrine "Well, parents know best..." I have taken to finishing that sentance with, "But you do what you want to anyway!" That usually wakes em up a little....
ReplyDeleteSteph
I was a respected professional working with children with developmental disabilities. Then I adopted a child who has down syndrome. People whom I knew as a professional generally listened to me. If a "new" person came to an IEP I would make sure someone told them my background so that person would listen to me.
ReplyDeleteAlong comes my 3rd child who has apraxia of speech. I'm not nearly as fearful for his future as I was my first child. It is amazing how knowing you don't have to have their help gives you power.
It doesn't hurt that I'm over 40 now so I get a bit more respect because of my age.
Your blog has opened my eyes a lot in the past year. As a TAB myself, I knew vaguely that some of the so-called ADA-compliant bathrooms weren't very accessible -- mostly because of a few times helping my mom in her manual wheelchair. But your blog has given me a much better education.
ReplyDeleteNow I'm shocked ... and then chagrined to be shocked ... because this post uses the same language to highlight the same phenomenon as what happens to People of Color when well-meaning white people try to explain that 'it wasn't really racist' or 'I can't imagine that hotel allowing an employee to ...' or 'he must have been having a bad day' or 'you must have misinterpreted.'
Sounds like able-ist privilege has a lot in common with white privilege, male privilege, and heterosexist privilege. Seems the 'dominant' majority just has its denial blinders on for everything that inconveniences 'others' but not 'themselves.'
Thanks for your beautiful writing about these events -- and for your eye-opening clarity about them.
I'm so sorry this @#$ happens to you.
The arrogance or ignorance of the healthy.
ReplyDeleteSorry for the length of the comment
It really didn't help when people sent me magnets, elixirs, and books on astrology, while other demoralizing contributions were, this or that medicine and what I should have done earlier to avoid catching the disease, or various remedies and exercises to cope with or cure the problem.----- “It is the unspoken belief of those who have never suffered from a chronic disease that it is somehow the patients fault that they have the disease”.
This is natural because people don't want to believe that disease can randomly come to them. That somehow they can prevent it.
I am sure that most advice is well intentioned but I for one am growing tired of people advising me to eat lots of protein or other weird and wonderful foodstuffs (sort of along the lines of our health ministers take on fighting HIV) and join a gym when I can barely pick up a spoon to feed myself and would require a hoist to get me onto a gym machine. (No, not because I am overweight) but because I have little to no muscles where it counts. I am sure that most disabled people have researched every possible avenue in search of the miracle cure, drug, diet or exercise. Not that we have suddenly become fountains of information but generally we are pretty clued up, after a while, as to what is good for us and what is not.
I am wheelchair bound, yes, but I am not mentally challenged or deaf, so it is not necessary to pronounce your words more clearly, speak slowly, shout or speak over my head to my care giver as if I'm not there.
It is a joy for me when people just offer to help and then wait for me to reject their offer or to tell them what I need, and in some cases, how to do it. There are times when I can manage "slowly" or when the maneuver is particularly complex and requires the help of someone who knows the procedure. We do need to feel comfortable and safe while carrying out certain drills, especially when transferring to or from the wheelchair.
OH MY GOD, YES.
ReplyDeleteIn the seventh grade I had an English teacher who tried to 'fix' my learning disability by making me write out the letters of the alphabet like they were 'supposed' to be written. She attempted this by giving me these sheets with big, overly enthusiastic instructions telling me to copy the letters to 're-learn' the alphabet. She expected me to do this perfectly in one week.
I informed her that you can't expect someone to re-learn the entire alphabet, including what direction the letters go and how they fit in relation to the other letters in a word, perfectly and without an ounce of help from her or anyone else('You're a big girl, you shouldn't need any help') in one week. I also told her that if people laughed at my writing now, they'd certainly laugh at it more when it reverted back to a childish block print. Finally, I said that the last time I checked I was thirteen(At the time) and not five, could she please give me some kind of learning tool meant for people with learning disorders, not for kindergarteners?
I was told,
"If you can't except my help, which I have so *GRACIOUSLY* and *ADEQUATELY* provided for you, then you are just making excuses for your own laziness. How *DARE* you suggest that that the help I am trying to give you is somehow below par..."
And she went on an on for a while, and called me something along the lines of an ungrateful little snot, only with more passive aggressive dribble.
Then she failed me.
So to answer your question, yes it most certainly is a common experience. Grrr.