"Have you been left all alone?" Her tone was suitable for a dog who's been tethered up outside a store, a dog looking eagerly at the door for the return of its master. Her tone was suitable for a small baby, sitting in the childseat of a grocery cart as its mother is picking up milk a few feet away. Her tone was entirely unsuitable for my situation. Waiting for the car to be pulled around before pushing out into the wind, the cold and the ice.
She was old enough to be my grandmother, and I'm 55. She reached out to pat my shoulder but I automatically pulled away so she stopped and smiled at me as if I was errant in my behaviour. As the car pulled into view and I pushed out, I forgot her. Didn't even tell Joe about her, so common is the experience of being spoken to as something less than adult, something more than a fern, that I brush it away. A little social violence. I brush it away.
At home I took a tour of a few disability sites as something was tickling the back of my brain. A thought that occurred, unbidden and unwanted, in my head. A thought appearing of its own volition. A thought I don't want to acknowledge. "Stop talking to me like I'm Retarded."
Forgive me, please. I hate that word. I don't use that word. I've written letters to complain about the use of that word in print, in television, in film. I use the word here because, first, it's what I thought - second, it's the only one that works to express what I want to say here. It's 6:30, my blog is usually published long before now, but I'm struggling to say what I want to say. So please ... let me try. And if I fail, I want to be valiant in my attempt.
A common theme throughout many of the sites I went to, those that published lists of 'how to be with / interact with / talk with someone with a disability" was exactly what I had thought. "Don't treat me, speak to me, approach me as if I was R*******". All blogs are innocently making a point, a firm point, but a point. Or maybe the point isn't that innocent.
But to me, yesterday, on getting home and thinking about the elderly woman with the voice that strangled self esteem, I came to realize that there is something bigger here. Why aren't these blogs, why aren't I, asking a much different question. Let me explain ...
Trust me on this ...
There is a voice that says ...
You are less than me.
You are less than most.
You are an object of pity.
You are an object of scorn.
You are an object of low worth.
You are blessed to hear my voice.
You are blessed by my compassion.
You are enriched by my attention.
You have nothing.
You want less.
You'll be satisfied by a drop of social honey.
You need my charity.
You want my compassion.
You deserve niether.
There are words that mean ...
I am grateful not to be you.
I am thankful that you are not mine.
I am able to give, you can only recieve.
I am worth much, you little.
I am a source of pride, you shame.
I am gladdened by you to be me.
I am speaking to you to be seen.
There is a voice that means ...
You are nothing, really, nothing.
No one wants to hear that voice. Website after website rails against the tone that dismisses and denies. Don't talk to me like I'm R*******!
UM.
Really, UM.
Why should they hear it?
Why isn't the voice, the tone, those words that slap - why isn't it questioned by all?
Why do these websites, written by those with disabilities, why did I - automatically assume that there is a group of people that that tone IS appropriate for? A group of people who welcome pity the way hookers welcome what wives spurn.
Why aren't we saying ...
"Don't speak to me as if I'm less."
"Don't pat me on the head with your words."
"Don't slap me about with your tone."
"Don't hurl kindness at me from the height of your superiority."
Why are we suggesting that these verbal evil-doers treat me with respect and cart their unwanted sloppy kisses over to those who truely deserve it, want it, need it ... you know the R*******. Why are we wanting to separate ourselves, as people with physical disabilities from those with intellectual disabilities? What is there in our insecurity as people that we kind of don't want them on the disability boat? What is there in our own manner that makes us givers of offence rather than as recievers?
Enough, again I say, ENOUGH.
That tone of voice leads directly to social death and social isolation. It leads to the destruction of self esteem and the creation of inferiority. It leads to youth kissing fists and then beating to death someone less, much less ...
That old lady thought she was being nice.
She wasn't.
She was being hateful.
And so are you.
Whenever you use that voice.
The voice that begins with assault and ends with murder.
The voice that none should hear.
27 comments:
This experience must have been difficult to put in the right words indeed, Dave, but I perfectly understand what you mean.It is as if I have gone through it myself, all the tiny but powerful eddies of feeling included.
I have read your post with a growing feeling of surprise, or was it shock? I am a "virgin" in the fields you have been walking for so long. So my first thought was: Well, an old lady( friendly as you are- you call her an "elderly" lady..)reacts spontaneously because she thinks she might help! She doesn't mind the tone of her voice, as I wouldn't mind mine if I cried out for help or "catch the thief".
For one reason or another, disabled people are extremely vulnerable I understand. They obviously just like every person want to be recognised as people of value, to be someone, and to be seen as such.
But because of the pain and the frustration when events like this happen, I thought ALL people should train themselves from an early age not to mind other people's opinion too much. To lose their ego's a bit, which would feel comfortable. To raise their shoulders and to say like Andy Warhal whenever something painful or dramatic happened: So what?
This old lady thinks I am half wit. So what?
My second thought has to do with my belief in the force of nature. I am sure nature works with paradoxes in its effort to create some equilibrism everywhere. Going through hard times is useful in this sense.The passion to prove self-worth (or to show one is worthy of esteem) may of course grow from such negative experiences as the one you have described today. My psychiatrist brother always talks about "compensation" and "fear" as two mighty factors of personal success!
Strange how your story and your reaction causes others minds even in another continent to think about things we'd otherwise neglect. I would be glad if one day you gave some hints about the best way to adress people.. in wheelchairs for instance.
Your post reminded me of a documentary about a basketball team that was going to the paraolympics. I think the movie was called "Killer Ball" or something like that. Anyway, in the trailer for the movie (a movie which I did not see), one of the athletes says in a very disparaging tone something to the effect that "we are real athletes--we are not special olympians". As the mother of a 4 year old beauty with DS it really bothered me that rather than embracing others, this person wanted to make sure he wasn't confused with someone with an intellectual disability, someone he seemed to assume was less a person than he was.
Thank you so much for what you have said here Dave.
Lisa
RE:Mieke's statement:
"But because of the pain and the frustration when events like this happen, I thought ALL people should train themselves from an early age not to mind other people's opinion too much"
But how is a person who is of limited intelligence going to rise above all this, when he gets spooned this tone, and this attiude from all around,from day one, and often from his/her teachers and care-takers?
There have been days when my 13 year old daughter (who has Down Syn. and ADHD) has been throwing a tantrum in the street (when confronted with limits she did not appreciate), and people come up and say, "Oh, but isn't she SSSOOOO CUTE?" (If I ever commit murder you'll know why....)
Dave, this post is SSOO true, and it has been a thing that has irked me for quite a while, without me being able to really verbalize it. I have yes often said that acceptance is when people will start treating and talking to my daughter like a teen, and not like a "Down syndrome"
That old lady thought she was being nice.
She wasn't.
She was being hateful.
I think she was being nice. Her intentions count, surely? She perceived someone who might need help, and made a friendly gesture.
I don't mean to minimize the frustration you felt - not at all. But I read about the nasty SOB you met outside the grocery store a week or two back. He was hateful. He was despicable. But the woman you met this weekend was trying to be kind. She was misdirected, and her perceptions were flawed, but misdirected kindness is surely a much better starting point than misdirected rage.
I am physically challenged and my daughter is mentally challenged so between the two of us I have seen it all. We must make quite a picture when we go to Walmart with her pushing my wheelchair. By my self I feel invisable with people walking in front of me in lines but with her that never happens because she will speak up and tell them "we were next." She is not socially challenged or spiritually challenged and sometimes I think I am. I have yet to learn some of the things that she figured out years ago and one of those things is to take up for herself. I am new to this status of being "disabled" while she has been who she is all of her life. I must ask myself why I feel like a different person since I married this wheelchair. Once again she is my teacher and I am her student. This has been going on for many years and I am again reminded that she is here on this planet to be a teacher. That is why I was chosen by some intelligent being (which I call God) to be her mother and student, because that being somehow knew that I was going to need a teacher in life. Yes, I feel chosen and I feel more grateful and honored than I can put in words. I am also thankful that I have found your blog because you are on the road ahead of me to point out the potholes and bumps along the way.
You are absolutely right, I often think we as the physically disabled should be more ashamed of ourselves, after all, we do know better.
There's always a but though. I do think that many people are being kind and polite and as they lack experience don't know how to cover their embarrassment (at offering assistance) I also think that what often isn't acknowledged well amongst the disability community, but what we all know is that there is a group of people who do enjoy all that pity and attention, it fulfils some pyschological need in them.
At the end of the day though, the most valuable lesson I learnt was not that becoming disabled showed me the best and worst of people on a day to day basis, it has been that with my learning how to accept myself, my body, my disability it gave others the freedom to show me the best of themselves more freely.
Bendy Girl (hoping this only shows the best of herself!) x
Years ago during one of your sessions with KW Hab, I wrote this poem on a napkin. I really was listening, but I find that if I don't write it down right away I'll forget it.
Me
Don't cry for me, I am not sick
Thou for this life, I did not pick
I am here the same as you
although there are things I cannot do
and I need your help to guide me
Perhaps with that you will see
That I will do the best I can
For me, not you, just hold my hand.
JoAnne
I read your blog quite often. I find your life very interesting. You travel more than I ever have, you meet lots of different people. If you hate it so when people talk to you in that tone, why would you treat her in that same manner? Sometimes you have to look at the messenger, not just the message. My grandmother, bless her heart, didn't understand a lot of things about the world today. I never judged her for it. If anythng I tried to help her understand. You should of answered her question. I think people that are always looking around the corner for the bad instead of the good miss out on a lot. Maybe you were having a bad day? We all have them.
I was going to mention the scene in the documentary Murderball as well. It's something I have struggled to put into words. As the mother of a child with DS, I have often thought we are both "other" and "the same" as folks with physical disabilities (my mother is among that group, so I am quite familiar). It would be wonderful if we could wed the worlds in a solid front against ignorance. And hatred.
I read your post and read the responses. I can see both sides of the arguement but...it was the question she asked, "Have you been left all alone?" That question implied that you shouldn't have been there (not without a keeper) and that you were doing something wrong. Had she asked "May I help you?" or "Are you waiting for someone?" it may be a little different.
But she didn't...she chose the words that hurt the most. The words that made that little ball of shame and self doubt sink to sit in the bottom of my stomach when I read them. The words that make you ask yourself if maybe they are right...you are doing something wrong.
I don't think her age is a good excuse. I don't think that there were any good intentions behind them. But I do think there is a good chance that she uses that tone with everyone she meets because it empowers her and makes decent people feel like scum. And being disabled made you a bigger target. And being a really good peson who is sensitive to the needs and feelings of others made you an even bigger target. And I think you should trust your instincts...you knew exactly what she meant.
I have relatives with intellectual disabilities, so I hear you on this issue. We have to root out disablism in ourselves. Even with people with intellectual disabilities, people can talk to them without a baby voice and ascertain through conversation if they need to adjust vocabulary or phrasing. If someone misunderstands, try again, just as we'd do with someone without a disability.
I found myself in a similar situation recently, speaking a bit too loudly to a person who is visually impaired last week. I didn't know her name, and I didn't want to say, "hey, you!" from across the room. At the same time, I also wanted to welcome her and introduce myself and others since no one else was. She did know one person there already. I didn't moderate my voice as quickly as I should have, though. Goodness.
I like what Martin Luther King said: In the process of gaining our rightful place we must not be guilty of wrongful deeds. Let us not seek to satisfy our thirst for freedom by drinking from the cup of bitterness and hatred.
thanks for writing this Dave.
I don't think I could word anything nearly as well as you could - and you've helped a great deal.
Yes, maybe the elderly lady did mean well, even though her words and actions were misguided. But that is not really the point of your post, is it?
If I hear you correctly it is that intellectually disabled people seem to be seen as "lesser" than other disabled people.
My son had Cerebral Palsy. Because he could not communicate -either verbally or with facial expressions - people thought him intellectually disabled. And I literally had to fight (talk fast and be very persuasive)for his life on a number of occasions when he ended up in hospital. To my mind there is not much difference in killing somebody with your fists or witholding medical treatment from him.
He died at the age of 17 months and more people than I care to remember have told me: "it is for the better". Whether he was physically as well as intellectually disabled made no difference to me. I loved him. He loved me. But it seemed to make a lot of difference in the world out there.
And even though I hate myself for it I often used his apparent (to me) "smartness" as a bargaining tool to get him medical attention or to just get people to acknowledge him. Thanks for writing this. It helped me made sense of my feelings.
You are right. That tone of voice is never okay, however well meant.
Dave,
I am often asked by family and friends to ignore derogatory/condescending comments because that are well-meaning although misguided. I am supposed to be the bigger person and shut my eyes to their ignorance. Your post has confirmed why I shouldn't.
Thank you,
Jacqui
Nelba, I just want to say I'm sorry people told you that. That's really awful and wrong, though they might not get that it is.
I don't think it's wrong that you pointed out his abilities. Parents of AB kids often brag about what their kids do because they're proud of them. I think it's fine to point out what they might not notice so they didn't miss ways they could interact with him; it's disablist for people to ignore kids with medical and health issues, and people should be taught to look past their prejudice and initial impressions. And there's nothing wrong with a little bragging about your kids.
I'm rarely fast enough to think of the educational comeback on the spot. The lady's question was hateful because her perception of you (me, us) as a person was skewed.
"Have you been left all alone?"
"I don't have a keeper, so, no, I haven't."
"I'm not a dog, so, no, I haven't."
"I'm an adult, I can cope with a little solitude."
Another thing that would have been appropriate to say to that woman would have been "Have you?" That makes it clear that you and she are both adults, and both entitled to be out in public by yourselves.
mieke.....while you might rather have a response from Dave, and you might get one, you stated, "I would be glad if one day you gave some hints about the best way to adress people.. in wheelchairs for instance."
In my personal experience the following work quit well(more so when eye contact is attempted):
Hi
Hiya
Hey
Hello
Nice Day
you get the idea!
and with regard to the older women and her very unfortunate choice of comment - well intended or not - I'm really sure that Dave takes a teachable moment when he can get one, and sometimes triggers are pushed. I generally find it better to expend my energy on those who give some hint of open-mindedness, or interest in introspection and change. While some little old ladies are of that ilk, many are not - they energy might be better spent elsewhere.
(Sounds like it was a bad moment!)
I came through Jacqui's page and must say that your post put a tear in my eye.
My 17-year-old has cognitive disabilities and is a very friendly and social guy. When we go into town, he always runs into someone he knows and strikes up conversations with them.
Interestingly enough, the boys he runs into talk to him "normally". About 75% of the girls make me want to bounce my shoe off their heads.
They talk to him in a baby voice as if he was a toddler. "Hiiiiiii, XXXX, how are YOUUUUUUUU today??"
On one hand, I find myself feeling a little grateful that they're not just walking away and blowing him off. On the the other, I'm furious at the condescension. My son's transitions leader and I've talked about it several times, because it's a subject that always puts a little twist in my pants.
Thanks so much for articulating all my jumbled up feelings about this. Really fabulous post!
Interesting post, Dave. I've learned something today--I'm never going to let someone talk to my son in the way that the elderly lady spoke to you ever again. It's my job as a parent to advocate, educate, and show the world that he is a person, he has feelings, and he is of WORTH!!
Thank you for the reminder!
Peggy, mommy to Cason, 3 years old and blessed with a little something "extra"
Thank you.
This is the most amazing thing I have ever read. EVER.
Thank you. I learned something very important today.
Newbie visiting from Attila the mom.
You're right. There is a tone. How do we get rid of the tone? I think we might eradicate the tone [which I'm guilty of too] by changing the underlying attitude from which it stems. I'm working on my own attitude.
Best wishes
That was a pretty powerful entry. I never looked at it that way and how could I having never been in your position...
I learned something so very important from you here today. Thank You.
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