Disability Etiquette

[Lysitheia]

Please don't respond to "I have Asperger's disorder" with "You? Oh no, I don't believe it. Those people are so awful, they don't have feelings."

Yes, I do. I am not defective. I am not an automaton. I have feelings and ambitions and dreams the same as anyone, and if I express them differently, it's not because I'm some kind of pathetic sub-human. Don't assume that I am a stranger to love, empathy and concern; The Infinite changed my brain, not my heart.

BF has Tourette's syndrom. Please don't tell your children we're on drugs. We can't control our various tics/stims any more than we are. That makes them afraid of us. There's no need; we'd both rather be asked an honest question by a child than have them cringe with terror as we walk by.

[Kaylee]

If you are talking to a person who uses a translator (such as a deaf person who has a sign interpreter), face the person to whom you are talking, not the translator.

(I sign, and I was talking with a friend who is deaf and another person who kept talking only to me and turning her body to non-verbally exclude my friend. And the other person was talking about lip reading and trying to learn sign language. I was rather annoyed on my friend's behalf.)

ETA: Sense. Faulty parallelism and general confusion redacted.

This is a really good one to include, because I truly don't think that most people who do this are being deliberately rude; it's just cognitively dissonant to face away from the person you're "talking" to--in other words, people do it because it feels more natural to face the interpreter and rude to face away from them.  You have to actively learn the etiquette of sign interpretation (and any other interpretation, too, but it does tend to be more obvious with sign language).  I studied ASL for a while with an idea of possibly being an interpreter, and even knowing the proper convention it can still feel strange to "ignore" the interpreter.

I also make a point of this when introducing new med students to the convention of professional interpreters in medical situations, regardless of the language--always address the patient directly, do not preface each question with "Ask her if..." or "Find out whether...".  If the interpreter is on the phone system, same thing applies.  And wait for the interpreter to finish before moving on to another question or, worse yet, a new part of the exam.

[AngelicGamer]

Number  : When helping a visually impaired person, please let them take your elbow and not the other way around.  The other way around jars the visually impaired person and might put them on guard/off balance.  Also, make sure that they know you're talking before attempting to help as well.

Case in point - I was in downtown Chicago for training.  I was in a good part of town but using my cane because I need to.  I wasn't used to the part of the town that I was in which was right around the Ogville station.  One of the people in the class thought to help me and asked in a way of "Hey Liz, need help?" And take my elbow.  I did not have time to process the information that was said and I didn't see him out of the corner of my eye.  I have learned, when in that position of someone just taking your elbow, to lock my elbow and swing my cane back in a sweeping manner.  Luckily for him, he was very quick and I was very apologetic to him.  He did end up helping me and I bought him coffee because I felt so bad.  However, he and I are good Facebook friends now!   

[KitFox]

This one is for those who are talking to the family of the disabled person in question:

*Do not make comments about how hard it has to be. Ask us how we are, or if you can help, but don't remind me about how difficult things have been. I already know!

*Do not talk to the family about the DP as if he/she is not there. EVER. It is offensive to all involved.

*Do not tell the parents of Autistic children that they just need to "learn to control themselves."

*For that matter, do not assume that whatever article you read in the newspaper/online/in a magazine last month has made you more informed than the DP and DP's family regarding the situation.

*Yes, Fibro Myalgia is a real illness. Saying you don't believe in it is like saying you don't believe in cancer.

[mmmchocolate]

In the US it is illegal for people (in restaurants, airports, etc-ie people in authority) to question why someone is using a service dog. As long as my daughter has all the correct paperwork (which she does) it is not their business.

For a long time she would just respond "It is against the law for you to ask me that."  Now she sometimes replies "She helps me figure out which are the real people and which are just hallucinations."  Then walks away-she loves the reactions.

[RooRoo]

Speaking of service dogs, you should always ask the handler if it is OK to pet the dog or give it a treat, and be prepared to take no for an answer.

And service dogs come in many breeds and do many tasks. If you see a little fluffy dog in someone's lap, wearing the service dog vest, don't assume that the owner is getting away with something. I have a net-friend from a dog training forum with a service Papillon. I have another friend whose service dog gets between her and other people. That's his job. She panics when her personal space is invaded. Not only does the dog help her keep her space, but he helps her feel less panicky, and she's slowly getting better.

If you're curious, the polite way to ask is, "What's his job?"

[Elle]

I have a question.

When talking with someone in a wheelchair my natural inclination (in the absence of a chair I can sit in) is to take a knee and get down to roughly their eye level so they don't have to keep looking up. However this always seems a lot like when you crouch down to talk to a four year old and I worry about looking condescending.

So which do I do?

[rashea]

I have a question.

When talking with someone in a wheelchair my natural inclination (in the absence of a chair I can sit in) is to take a knee and get down to roughly their eye level so they don't have to keep looking up. However this always seems a lot like when you crouch down to talk to a four year old and I worry about looking condescending.

So which do I do?

My preference is for the person to just take a step back (so I'm not looking straight up). This also solves my issue of personal space. People generally measure personal space from face to face, but since I'm not on the same level, it screws that up. So people end up standing very close to my knee, which is not fond of being touched.

I don't want anyone else dislocating their kneecaps to be on the same level as I am.

[Elle]

Thank you 

[JaiJai]

Some disabilites are not visable - so if you see someone parking in a disabled space with a badge, don't berate them with 'there's obviously nothing wrong with you'.

If your child has a question, take the opportunity to educate them or allow them to ask us politely (most disabled people would rather be asked than stared at and whispered about). Do not respond as one woman did in my presence:
'Mum, why is that lady in a wheelchair?'
'She's too lazy to walk dear.' !!!

Further to the point about not talking to disabled people as if we were children:
If you want to ask us something, ask US. Not the person pushing the chair / assisting / whatever. I am quite capable of telling you what I want to order, why are you asking my husband what 'she' wants?

Most of us are not disabled because we are overweight / underweight / smoke / drink / whatever. I am slightly overweight because I used to be extremely active, now I can't get about I find it hard to keep the weight off. The weight did not cause the disability, it was the other way around. And anyway, even if it had caused it, what gives anyone the right to comment on my weight?
Jai
x

[KitFox]

Most of us are not disabled because we are overweight / underweight / smoke / drink / whatever. I am slightly overweight because I used to be extremely active, now I can't get about I find it hard to keep the weight off. The weight did not cause the disability, it was the other way around. And anyway, even if it had caused it, what gives anyone the right to comment on my weight?
Jai
x

Poddity Poddy Pod! This happens to my mom All. The. Time.

[kitty-cat]

I get the "You're fat because you are lazy" line all the time.  Actually no, I've an underactive thyroid that kills your metabolism (slow metabolism=hardly any energy).  Before my thyroid went to heck I was a hyper little girl and skinny as a rail.  (I'm on meds now for my thyroid and I'm starting to notice an increase in energy now. yay )

People have no idea how hurtful their comments are when they don't know the back story...

[Midnight Kitty]

I have a question.

When talking with someone in a wheelchair my natural inclination (in the absence of a chair I can sit in) is to take a knee and get down to roughly their eye level so they don't have to keep looking up. However this always seems a lot like when you crouch down to talk to a four year old and I worry about looking condescending.

So which do I do?

My preference is for the person to just take a step back (so I'm not looking straight up). This also solves my issue of personal space. People generally measure personal space from face to face, but since I'm not on the same level, it screws that up. So people end up standing very close to my knee, which is not fond of being touched.

I don't want anyone else dislocating their kneecaps to be on the same level as I am.

I'll add my husband's POD to this.  About the only thing he likes about his wheelchair is being eye level with children.  He loves children and we never had any, which turned out to be a good thing because our plate is full.  He wishes he had a Segue (sp?) just so he could be eye level with adults.

I'd like to thank the perceptive doorman on that steep San Francisco street who saw me struggling with my husband's wheelchair and ran over while asking me, "Can I help you?"  I had just told my husband that we had to stop, my hands were cramped up and I couldn't hold the chair any more.  Being a stubborn man, he said, "No, it's just another block."  No, honey, we're not goin' make it another block!  If that kind doorman hadn't rescued me, I would have let go & DH would be at the next block before he knew it.  I really appreciated that the doorman asked ME if he could help ME!  DH was gonna need his help in 5 seconds, but I'm the one who needed his help at that moment.  If he had asked DH, DH would have said "No," and I would have let him go! No - I wouldn't "let" go, but I couldn't hold on & he just would not accept my limitations.

For the record:  DH has had sacroilliac joint disfunction for 14 years and lost the sight in his left eye last year.  In addition, he has mild adult ADHD.  I have fibromyalgia, partial deafness, and my shoulder/back was permanently injured in a car accident.  We think we're doing OK for a couple old crips  I would roll my eyes at anyone who called us "differently abled" or "alternately abled."  Tell me again, what ability did DH gain when he lost his eyesight?  Yep, he's still bitter 'bout that.

[ladyonwheels]

disabled etiquette number: i forgot what number we're on ;p

if you are speaking to somebody who uses a communication aid to speak, please allow enough time for a response rather than attempting to put words in their mouth.

while i know how to talk and can, but unfortunately only those who know me very well can understand what i'm saying, and therefore i use a dynavox device controlled by a head switch. sometimes it might take me a moment to compose a response to somebody, and i really hate it when somebody doesn't give me enough time to respond properly before they start talking to somebody else.


etiquette number i still don't remember ;p

ask before trying to feed a person who cannot feed themselves.

if you are going to offer me a bite of food, please ask if i want it first. don't just shove a spoon in my face and assume i eat anything. i have food aversions too and i happen to absolutely hate potato salad. guess what people always want to shove in my face at potlucks ;p thankfully i have been able to nonverbally express my dislike by turning my head away.


etiquette number i still have lost count...

don't touch somebody in a chair without their permission, especially so if you do not know how to properly pick them up or adjust them!!! it is very dangerous.

unless i am in danger of strangling on a strap, please don't touch me. once in awhile my body will lean to the left and it appears that i might be falling out of the chair when i really am not. it hurts if people try to shove me back into the middle. my chair has straps that will keep me from falling out. do not tighten them unless i say to!!!


last but not least, and this is a personal peeve, i hate it when people who are talking about 'playing scrabble' suddenly change the subject when i join them. i am married to a wonderful man who helps me in every physical way i need it and it bothers me that people think i do not have those kinds of feelings too.

[petal]

if you say you'll do some respite for someone do it. dont make up some fake excuse and let them down.

(feeling a tad peeved at the moment)