The day before ...
Yesterday I wrote about not speaking up at the movie theatre, about the exhaustion that comes from the constant need for advocacy. I talked about the despair I sometimes feel about having to ask for consideration when it, really, should be freely given. As I read the comments I began to think more deeply about my reaction and the 'why' behind the silence. I had attributed the silence to weariness of the constancy of the battle, but I think something else is happening.
The day before ...
I was in a line up in the grocery store. The woman in front of me, with a basket of stuff, was chatting with another woman, with a basket of stuff, in the line up beside us. When a price check was called by the cashier at the other checkout, the woman said to her friend, 'I think I'll come over there and join you if that's OK.' The other woman said 'Sure' and welcomed her friend into the line up ahead of me. I said, loudly, to Joe, 'I guess we simply don't count.' The woman coloured and turned angrily to say that she and her friend were together. I said 'I don't like people cutting into line in front of me without asking me.' She said she asked her friend. I said that it wasn't her friends decision alone, we'd been waiting patiently for our turn. The two of them were really upset by my thought that 'line cutting' was unacceptable and that my protest was ill mannered.
What astonished me was that everyone around, at least those I noticed, looked sympathetically towards the two women. The woman who stepped in front caught the eye of the cashier and rolled her eyes. I said, 'Don't roll your eyes, you don't like people cutting in either. I don't like being treated as invisible simply because I have a disability.' That astonished everyone. That I thought it was a 'disability issue' seemed outrageous.
But I did and I do. I know. I ACTUALLY KNOW, that people with disabilities get discriminatory treatment. We are way too visible at some times completely invisible at others. Yet I think most people think that people with disabilities are simply recipients of society's generosity. Think about it everyone knows what 'sexism,' 'racism,' and 'homophobia' means. Do you think that, outside of the disability community, the words 'ableism' or 'disphobia' are understood. People don't even recognize, with a word, that prejudice against people with disabilities exist.
Thus protests lead, often, to a sense of sheer isolation as many react with annoyance that an 'uppity cripple' is making a scene or calling out prejudice.
I felt entirely alone.
The month before ...
I am in a store and hear an employee make a joke with a fellow staff and says, 'I always knew you were a ret@ard.' I stopped dead in my tracks. Double checked to see that I was, indeed, in a public space. I rolled over to make complaint, first with the speaker - who didn't get it, then with the manager. I acknowledge that it did get a little loud. Them protesting that they 'didn't mean anything by it' my protesting that words have meaning. The manager and the staff caught each others eye and there was overt communication that I was simply over reacting.
And what astonished me was that everyone around, at least those I noticed, looked sympathetically towards the two men. I grew uncomfortable at now being the centre of the spectacle. The person who tossed a hateful word into a public space was now the victim and I was the victimizer. My feelings as a person with a disability were completely disregarded. It didn't matter that I might have felt pain at hearing hate speech in a public space, it didn't matter at all. What mattered was that I broke decorum and spoke up.
I felt entirely alone.
I had, at one time, believed that there was a quiet public support of the idea of equity and equality for people with disabilities. I no longer really believe that. I believe that there is strong public support of the idea that people with disabilities are cumbersome and unnecessary and that what we are given are concessions and what is expected is gratitude. We are NOT seen as a legitimate minority. We are NOT seen as engaged in a civil liberties movement. I don't believe that we have begun to get the message across that we are wanting RIGHTS AND RESPECT.
So sometimes I don't speak up, I am now thinking, because I don't want to have that sense of utter aloneness. That sense of being 'the problem' when speaking up to address 'the problem.' I don't believe that others in the theatre would have been on my side, I think that most would have simply been annoyed at having their fine time, at a movie about the life of a person with a disability, disrupted by a person with a disability.
Is that irony?
I don't know.
But it certainly is depressing.
I know, just know, that even in writing this there will be those thinking or saying: 'Those things aren't about disability. Those things don't mean that there is prejudice against people with disabilities. Those things can happen to anyone, regardless of disability.'
I know, just know, that there is this deep need, even in the disability community, to subvert our experiences and fold them into the 'norm.' Into the idea that prejudice just doesn't exist in interpersonal interactions in the community. I know, just know, that people will pull out times when people cut into lines in front of non-disabled people to explain how discrimination is my INTERPRETATION of what happened, not what ACTUALLY happened.
But if you live life alert, you will notice patterns of behaviour, the constancy of invisibility, the regularity of disregard. If you live life awake, you will notice patronizing voices saying patronizing things and soft eyes offering pity rather than respect.
Until we acknowledge discrimination we can't fight against it.
Until we confront our own sense of 'deserving less' we can't begin to demand equity.
Until we eliminate the sense of individual aloneness we won't have a community where anger can be shared and comfort can be sought.
I'm so sorry that these incidents happened to you, and that you didn't get any support from the people around you. There is a lot of bias against anyone who "makes a big deal" or starts any sort of confrontation in public -- and when you're in the less powerful position, it's even worse, because people resent you even asserting yourself.
I wonder if some people will read your story and have the reaction we've talked about on this blog -- "but I'm not disabled and people cut in front of me sometimes." I want to preemptively say that yes, we've all had this experience, but it's different for people who are disabled -- I think a disabled person is more likely to be cut off and ignored, and people are less likely to ask permission when they do it. I also trust Dave's experience and the fact that he knows when someone is being more dismissive of him than they would be to another person.
We've also talked on this blog about how most people have a tendency to just stare instead of backing you up in these situations. This post is another reminder that it's so important to speak up -- I really hope it stays with me, and that when I witness something like this, I will do the right thing.
One more thing -- on the subject of people saying "but this happens to me" and not thinking there's any difference, I love this part of your post, and I think you said this very eloquently:
"But if you live life alert, you will notice patterns of behaviour, the constancy of invisibility, the regularity of disregard. If you live life awake, you will notice patronizing voices saying patronizing things and soft eyes offering pity rather than respect."
I think much of the time it really is the "permanent grind" aspect that non-disabled people just don't get.
WRT line-cutting - exactly. Yes, it happened to me once or twice a year during my adult life pre-disability. And I responded with nothing more than bemused silence and an eye-roll exchanged with another shopper because it was not the end of the world. But in the chair it happens all the time, as if people think I've just been parked there and it's okay to just step around me like a fixture.
That's the worst bit, I think. It's not that they don't see me. If they didn't see me then they would bump into me, trip over me, or get caught on the handles of the chair. They see me all right. They just don't register me as a person.
I no longer have the non-disabled privilege of standing in a queue and fiddling with my phone or gazing vacantly around the store. Every time I enter a queue I'm keyed up to assert my existence as a person.
110% agree with you Dave.
I get confused by some of your posts Dave. One day you are gung ho the next you are the victim. One day you say to speak out and the next you are quiet. If you are confrontational you will meet resistance. If you are passive you will be overlooked. If you don't want to be ignored then be prepared to stand out.
Maybe because my disabilty makes me constantly tired and lets me feel much much more than others (I hear better than the average person and I can not stop "feeling") and I notice things around that people are impolite a lot.
And because I can not think and do what the average person is able to do. Everything that hurts me hurts me more. I can not shrug my shoulder and go on.
And so I feel the eternal internal struggle of dealing with impolite people. And somedays I so much wish for another more silent planet to live on...
I'm reminded of a time on a bus when a man standing was allowing his bag to hit my foster son (who has very severe physical disabilities and isn't able to move any of his body at will) in the face. I think he was initially unaware of what he was doing, only then I pointed it out (politely, because I think he hadn't noticed) and then he continued to do it. And the thing is, I didn't respond exactly because I wasn't sure the rest of the bus would be on our side, and my foster son was so very vulnerable if the situation had escalated and become aggressive - I could get off the bus and out of the way but he definitely couldn't, so I couldn't take the risk. Would the man have let his bag thump someone who could thump him back? I think not.
When people don't feel valued, fulfilled, whatever, the human instinct is to hurt those seen as lower down the pile - so while that's where society sees those with disabilities these things will continue to happen. Sadly, Dave, you're not imagining it and it IS a societal prejudice that needs the sort of challenge that racism and other discrimination has received.
And that challenge needs to come from all who think that way, not just people who have disabilities themselves.
Crikey Dave YES YES YES. I have come to this knowledge myself over the last 15 years while I worked as a disability activist. Sometimes I speak what I KNOW to the ableoids and they become outraged and hurt that I think such things. I don't just think them. I KNOW THEM. I LIVE THEM EVERY DAY AND EVERY SECOND.
Even when I preface what I say with "I believe it (the shit attitude) is most often subconscious". And I say "it is in me too and I have to keep watch for it all the time".
No, everyone including me "subvert" the experience and question that it was discriminatory. And if it IS recognised as being discriminatory then it is 'they didn't mean it". And often my crip friends are more horrified by what I say than the ableoids because they have subverted so much to stay safe that they are inside out!! FFS.
And when minorities are mentioned in the media they are racial, gender or sex preference. Even the Aged and "single parents" get a big mention. Never Never Disability!!
I have come to the knowledge that whatever I do or however I educate I will never be seen and regarded as a full human being. Not in my lifetime nor in quite a few (dozen) generations to come. Such a shame for both the world and me. I am sad and angry too Dave. Hug. Glee
I once shared an experience of discrimination with a group of people who did sympathize on my behalf--but it turned out that they only saw it as an incident of rudeness in the way the situation had been handled (I was sworn at and hung up on) and could not understand at all why I said being denied the accommodations I needed (in the same phone call as the swearing and being hung up on) was discrimination. They seemed to perceive my needed accommodations as mere "preferences" not needs. This was a group of people who themselves experience discrimination on a regular basis, though for other reasons, so I had (I guess somewhat naively) hoped they would be more understanding than the average non-disabled group of people.
So I do get the fear that others will simply be silent, or that others will be sympathetic only with the other party.
I once tried to describe to someone, not that particular incident, but the way that non-disabled people in general don't always seem to recognize accessibility as a civil/human rights issue. And that person tried to insist that most people *do* recognize it as a rights issue. But, that's not what I see when I try to bring up actual concrete complaints about situations involving actual rights violations in the form of denying access or needed accommodations. But some people seem to think that their assumptions about the world (in particular if they are trying to cling to the "just world fallacy"--google that term, you'll find some interesting content) automatically is more valid than repeated, and repeated, actual lived experience.
Here is something I wrote as a comment on Australia's ABC website called "Ramp Up" a mainstream media site re disability. I made the comment in answer to ableoids often grumbling about us crips wanting "special" treatment and about us wanting SO MUCH (equity in how many wheelchair users can get on one aircraft? some Aussie airlines restrict us to 2!). And that we are lazy and greedy. AND this occasion answering the statements by politicians that the proposal to launch a National Disability Insurance Scheme NDIS (which will provide support to all people living with disability properly) cannot be done until the country is in a good surplus financially. WTF? GRRRRR!!
"What everyone seems to be missing is that ALL NON DISABLED PEOPLE have their basic needs met. And that costs a shitload more than $6 billion per year every year.
Everyone subsidises everyone so that thay can all function.
However people living with disability have NEVER had their basic needs met. We have been left to rot for centuries.
We are not asking for More. All we are asking for is the Same.
Our needs must be met in a different way to those without disability. THAT IS ALL! We still eat, toilet, shower, recreate, travel, work just the same as others. OR AT LEAST WE WOULD IF WE WERE ALLOWED THE SAME SUBSIDIES THAT OTHER AUSSIES HAVE.
The thing is that most ableoids think we are greedy and want extra stuff. SO not true. They do not realise that we have been left to rot. They think that the Government supplies us with everything we need. Or they think that we all have this thing called a "carer" to enable us every day. Again SO NOT TRUE!
I receive the minimum support from Gov funding. And many of us DO NOT HAVE AN UNPAID CARER. I don,t have a carer or family member to assist me. And why should I have to depend on some poor family member to assist me? I am an adult aged 55 and perfectly able to live a full life if I Am ALLOWED through a fair and equal distribution of Australia's common wealth to do so.
Ableoids have been catered for always and do not understand that we have not and are still not.
We are not useless if we are supported properly. One would find that many ableoids would not cope if they did not have the means to get up and shower and eat and then catch a bus to work. Or perhaps if they could not have a job cos someone else always deemed them unfit without really knowing if they are or not. This is the life we live every day. Shut out!
Get real Australia and stop letting your prejudice be your selfish guide."
I have to agree with you. When I am trying to teach about prejudice against people with disabilities, I have to start with racism because everybody gets recism - they can identify it when they hear it or see it. But if I make the same statements and subsitute ablist sentiments - they don't get it. Our society seems to have a block to really seeing prejudice against people with disabilities. I find this in class after class.
In one of the books that my students read the author states that he did not like being around people with significant disabilities at one stage of his career. (I really admire this author for his honesty and willingness to share his journey so that others can benefit) My students read this and do not get that it is prejudice. As soon as I rephrase the statement saying that the person did not like being around Black people or Asian people for example - then the students get that is a prejudicial statement.
I had a guest speaker in my class last semester - he comes every semester. He is a man who has lived in institutions and he shares what it was like with my students. He does this because he wants them to know and understand so that it never happens again. He is an articulate and passionate teacher. Last time, as we were clearing out of our classroom to make way for the next group of students from a different program, 2 of the students from the other program were chatting and one said to the other, "That is so retarded!" My guest had just spent about 1/2 hour of his 2 hour presentation talking about how hurtful language it. I just had to call them on it - they were not very receptive. I pursued it with their teacher and with others in authority. Some people are supportive of my request to intiate an anti-hate-speech campaign at our college and others just think I am weird. I'm okay with weird. I am not okay with a man of courage, passion and wisdom who voluntarily shares very personal stuff with my students to enhance their learning and then has to hear hate speech (even if it is not directed at him). Those students "didn't mean anything by it" and the comment was not directed at my guest speaker. But it was still hate speech.
You are right Dave, so right about this! How to do battle here though - that is the question.
Dave, I promise here and now that if I see something, I will say something. And if I see someone else saying something, I will join my voice with theirs.
Today's post seems to have hit a big nerve for many people because I'm seeing here a lot of passionate comments, many of which themselves hit a nerve for me.
I see a couple of anecdotes in this comment thread that seem familiar to me, I think because the authors have raised them in other comment threads here at Dave's blog. It can be worth repeating certain anecdotes from time to time in any case because you never know when there are new people reading them. But I think it also says something about both the resonance of Dave's post today to help bring forth anecdotes of similar situations and also the power of the experiences that people like Louise and Colleen have shared (and the hurt and anger and frustration in these experiences) that they are so quickly and easily brought to mind again and again.
I hope it is clear that I'm not at all criticizing any redundancy --in part because there are always new readers here but also because I see a wider meaning in them that I tried to express above. Hope all this has made sense.
I feel so tempted to write an individual response to almost all of the comments here, from Glee Louise Colleen CL Mary and Julia. But then I would be here forever because where does it end? All of you have written something today that resonnates or touches me or made me think in some way.
So, only a short comment to the first "Anonymous" at 4:24 am (Not Julia anonymous but the one with no name at all)--yes, Dave like others sometimes seems to contradict himself. This usually occurs because life is complex and difficult: it IS ideal to try to speak out when injustice (or just plain disrespect) is done. And I think Dave is great at doing this, he has done this on many occasions when probably most of us would have given up. But I think Dave does sometimes hold himself up to an impossible standard. He's human. And like many of us, he gets tired of fighting and occasionally takes a break from it by letting certain things slide by. And, as he explains here, he is also human in being wearied by the constant invisibility of his experience--when raising objections can so very often result in people seeing you as the problem (instead of, you being the person helping fix a problem by bringing attention to it). It hurts when an injustice that seems so plain to us is simply not seen as such by others.
Yes, there are times when we need to accept that others are going to see us as "weird" or "the problem" (instead of the person reporting the problem) and speak out regardless. But it's also okay to occasionally take a break from that, if only to conserve our psychic energy for some other, maybe more critical battle that's coming soon. And you know it's coming soon because there's always going to be another one coming. (This is part of the constant "grind" another commenter here referred to). And I don't think it's "contradictary" to accept both of these proposals simultaneously--it is merely a more nuanced approach to handling an ongoing barrage of injustices.
I don't know if this is the right time to say this -- is there ever a right-and-perfect time? -- but:
I am able-bodied.
Rarely does a day go by that I do not read this blog, and the comments.
I used to think I was a nice person, or at least trying to be one. This blog has heightened my awareness, changed my outlook, and -- hopefully -- continues to make me a better person.
And is what I wasn't able to express to my mom yesterday about why I am non-confrontational in public, except on rare occasions.
It's not just that little things happen over and over again, it's that to speak up sometimes makes you the troublemaker. There have been way too many situations where I did speak up but no matter what I said or did wasn't taken seriously. I think this goes back to my days in school, middle school particularly, when no matter what I said and did to defend myself, I only got treated worse. Even the teachers blamed me.
There is a point at which I have had enough of this stuff and simply don't have the emotional energy or toughness to, yet again, be the bad guy by speaking up for myself. So I keep quiet and get away as quickly as I can.
And that's just sickening. Nobody should be in that position, ever. Fortunately I have family and friends who will stand up for me when I am unable to, but not everybody has that luxury.
Being the one who is disabled, I dialogue with my "abled" friends a lot about issues like this. I often feel badly because I am slower, hold them up, have special needs and concessions, etc. I am fortunate to have friends who say they are with me because they want to be - and go out with me knowing what to expect. Yes - fortunate. I value their opinions because they are the accomodating sort and have had experience. These are nice people - but they have interesting opinions. They wouldn't say they are predjudice - but do wonder at times. It is not the need but the expectations of many of the disable that get them. The expectations that so much should be provided - often at their expense. They don't deny that those with disabilities should have access, but if they want to be like everyone else, then they should be treated like everyone else. Example: waiting in lines; taxes deductions; etc. Families with disabled children get free tickets or access to horses or university projects. A few of my friends hover around the poverty line - working poor - and how they would love to take their children to many of the things offered. Reminder - these are nice, law-abiding, tax paying people. They know I struggle - they see it - they help me - and they are glad when there are things out there to make it easy for me. No - it's not predjudice - maybe a little resentment that their turn is superceeded by someone in a wheelchair, the best seats, the best parking,discounts and more.
I asked them if they avoid those with disabilities - and most of them said it depends. The more severe the disability - the bigger the berth. Mainly because of fear. Not knowing what to do, what to expect and if any interaction is possible. If in doubt - don't is their philosophy. I understand that - I'm the same. I certainly don't want to interfere. We. as disabled, don't belong to some secret club - but share some similar struggles.
People are not going to get it unless we tell them. I certainly would not let someone bang their bag into my head - or anyone elses - able or non-abled.
I also feel that I have to watch my attitude. I can't expect others to understand what they don't experience themselves. I can get angry or get busy and tell people. Sure, it gets tiring - but it is worth it. There are no knights in shining armor that are going to pave our way - we need to do it for ourselves, and those that follow.
Like my friends who comment that they never even noticed all the issues (expecially for mobility) until they spent time with me - others may get a glimmer of understanding - and with that - respect.
I get pissed off too - I made a huge scene at a restaurant once because I overheard someone use the r word. They said that it would have been better if I was polite about it instead of calling them out.
I've done this before about people who say things like "thats so gay" etc too. I don't want my son to live in a world where this is acceptable.
My son has a mild intellectual / developmental disability - what used to be called "mental r word-ation"... and he, at 13 has actually had kids over the years call him that word!
ITS 2012. When I was a kid I never thought that the world would still be like this. My rose coloured world sure crumbled fast when I was out in the real world.
RE: "Being polite"
When you use hate speech the luxury of my politeness is gone.
Re: being "polite"
I think that courtesy is something that has to be given in order to be received. My policy is to assume that people are courteous until they prove otherwise, but once they do, all bets are off. When I hear people using slurs (homophobic, racist, ableist, etc.) that is enough proof for me and I will call them on it. Usually I go with something like "Sorry, but you shouldn't use words like that, they're really harmful." 9 times out of 10, I get the "it doesn't mean that anymore" or the "I didn't mean it that way" responses. Words are still harmful, and I think it's alright to call someone out on using hate speech. I don't want to live in a world where hate speech, name calling and identity-based insults are considered appropriate either.
Anonoymous, I can definitely sympathize about feeling like I'm holding friends back with my physical disability. One of my friends even has an invisible disability, and she told me one day that she was sorry for not conceptualizing my knee injury as a disability even though it has a huge impact on my ability and will for the foreseeable future. That comment was actually the first time I considered that it might actually be a disability. I didn't bounce back the way I was expecting to, and now it's been over a year...
When you're right, you're right.
You're right, Dave.
And you are not alone.
I am quite a downright, outright person, and those things happen to me on a regular basis. I can only imagine what other things happen to people with disabilities who are quiet and shy.
It is very disheartening to think that in 2012, a large proportion of the population seems to think that it is okay to discriminate against people with disabilities, but that is how it is.
Hi Dave, really eye-opening, I have learned so many ways to live life alert from reading this blog. And have many times been eye-rolled, even from fellow lefty social justice types, for saying that use of the r-word is not acceptable.
I hope you don't mind that I linked to this post in an entry I wrote today. Reading your words really hit a cord and I felt as though I needed to write about my experiences as a social work student. I think people forget that there is discrimination happening against people with disabilities and that this needs to change.
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