Saturday, May 10, 2014

An Honest Reaction - Hurt from Unexpected Places

Can we straight up make something clear.

Prejudice and discrimination are part and parcel of the experience of people with intellectual or physical disabilities or intellectual or physical differences.

I'm not sure that people recognize that the kinds of experiences, the micro, midi and maxi aggressions that come with the territory of disability are too diverse to list and too unrelenting to count. Sure we learn to cope but our coping on a daily basis doesn't mean that we've had days on end without experiencing some form of social violence or some kind of social belittlement during that day.

I am NOT an expert on the lives of all people with disabilities. But I am an expert on mine. I am an expert, then, on the very specific kinds of prejudice I run into and I am very, aware, of the extraordinarily high rate at which it occurs. I need to think about that when I think about my life and may plans.

I wrote a blog post yesterday about the anticipation and anxiety I have when having to put myself in situations where I need service from others. The more people I will meet, the higher the anxiety rises. Somebody who understood things about percentages told me that the risk rises. He didn't have to tell me, I knew.

I wrote a deeply honest blog about my fears of who I would meet and the choices they would make in how that service would be provided.

I was deeply honest about my anxiety - I've been worried for a week.

I was deeply honest about the sense that they have choices that I do not.

And yet, in my own comments, from my own readers I am told that I am 'cloaking my self in the role of victim' or it was suggested that 'when you go out looking for problems, you are going to find them.'

I usually like my comments but these two, anonymously made, stung me. No, more honest, hurt me.

I always feel uncomfortable writing true feelings about situations of great vulnerability like the one I faced yesterday ... air travel. I wanted to put that sense of vulnerability in the world.

I don't think that acknowledging that, as the world is full of prejudice and discrimination, the worry about experiencing it is cloaking myself in victimhood. I don't think that stating that others have choices that I don't comprises tying the cloak around my neck. I need to fly, they can be as bigoted as the get go and I've got to get by them and get on the plane. Here is were strong advocacy may be the right thing to do for the cause and the wrong thing to do to get on a plane.

The idea that those who experience the blunt end of prejudice and the sharp end of discrimination on a routine basis, go looking for it. This is the kind of thing that is said when women talk about sexism at work ... if you look for it you'll find it. Of course, because it's fucking there. I do not go looking for discrimination, I need not search behind the couch for prejudice. My wheelchair, and my difference, is like a huge magnet for hostile attitudes. It comes to me. I don't go to it - who would.

The kind of blaming the victim statements ... if you had happy attitudes they would lead to happy encounters ... um yeah, right .... if black people and women and gays had just been happy they'd have been voting, participating equally and have full access and equal protection under the law. Right.

Cloaking oneself in victimhood is so offensive and so hurtful to me that for the first time I thought, is it safe for me to be honest about my feelings here? I was horribly hurt by that remark. I do not live the life of a victim. I do not secede space that is mine. I speak up when necessary and though it's  not constantly so, it is at a pretty high rate..

People with disabilities, like me, sometimes need to be around people who see that prejudice exists, who understand that situations of high risk of meeting or dealing with prejudicial attitudes cause anxiety, who wish to create a safe space of honest discussion of what it is to live in a world that isn't always, or maybe even often, or maybe even rarely completely safe for disabled people to enter and to participate.

At this point I keep thinking to myself. "Why did I tell them the truth about my fears and my sense of loss of control in the hands of another?" Well the answer was: I felt safe to do so.

Do I now?

Not sure.


Louise said...

I'm glad you felt safe to talk honestly about how you feel, and I hope you continue to do so. A VERY high percentage of your readers, I'm sure, feel honoured by your honesty and your vulnerability helps create a safe space for others to speak into.

By the way, if you ever get the chance to go to Lourdes, I recommend it! Not only is everything adapted, but folk who are disabled or ill are treated with huge respect and welcomed warmly…… the airport adapted with a quiet waiting area and accessible loos, and a 'red route' throughout the town where wheelchair users have priority over the traffic. I was there last week with a friend who has CP, and it was a refreshing experience!

Jenni said...

I'm sorry that people said hurtful things to you, Dave. Since I got sick, I've read all your blog posts (I started with the recent stuff, thought it was great and went back to the beginning) and I've found them a great comfort. When I struggle to adapt to my new disability and even newer power wheelchair, I take comfort from your honest writing about your process of adapting and continual adaptation. I've talked to my husband about you, as though you're a 'real' friend in my life and when I get fed up with this being disabled malarkey he asks me 'what would Dave say?'.

It seems to me that the anonymous people yesterday may have been working from the just world hypothesis - 'if bad things happen, that's due to something the person on the receiving end did'. (see for more info) So when you bravely publicly admitted to natural concerns (many times bitten, therefore sensibly shy) they could use the just world hypothesis to blame you for things which are absolutely not your fault.

I work in safety management and one of the things I've learned is this: without a little risk, you end up with a very little life. The trick is to know there's a risk and manage / respond to it with open eyes. You take a calculated risk each time you post honest, open and real blogs about your life, Dave. But, for me and I'm sure many others, the risk you take pays dividends. I hope it does for you too.

Tamara said...

I read your blog yesterday, but didn't make it to the comments. Just did. Wow. How disrespectful. When I see the never-ending memes that suggest positive attitudes make for a happy, easy-breezy life, I shake my head. I'm a positive person, but that doesn't mean bad stuff that doesn't need to happen, that's totally other-human created, doesn't happen. And while the world isn't fair, it doesn't mean that we shouldn't be fair or try to make changes to make it a bit more fair for ourselves and others.

That said, the world *isn't* fair and comments on the internet can be cruel. I don't think there is a truly safe place. I can't imagine the courage it takes to be as honest as you are every day. I just hope you can continue to find that courage and know that the majority - by far - of your readers respect and value what you do. We get it. We learn. It's important.

What was that quote from The Help? You is kind. You is smart. You is important.

I hope you face less obstacles today than yesterday and that those "nothing means something" days become routine.

Monica J. Foster said...


Thank you always for sharing who you with us. I can't really know you without meeting you, and I hope to some day, but feel I know you and your experience better with each post I read.

As to addressing the victim crap from the previous posts that hurt you, I'm so sorry that happened. While I myself am a bit of a positivity nut, believing that our experiences and attitudes in some ways shape outcomes, I would NEVER say or even think that being an advocate, being genuinely afraid of vulnerable moments in the hands of others was self-projected.

You've experienced it. You don't go looking for it. I don't either as an amputee on wheels. And yet, when we both get up in the morning and venture out our doors, there it is...sometimes awaiting us like a black cat to cross paths. Sometimes we run it down, go around, and sometimes we proverbially reach down and pet it. *laughing*

You are a SURVIVOR because you are able to dissect your experiences before, during and after and glean lessons from them for yourself and others' benefit. If you were a victim, your whole demeanor in life would be about not going on planes ever. You'd settle for not leaving your house at all, never risking any benefits being cut by working, never risking rejection being in a relationship, making friends, etc.

You are a survivor, NOT a victim -- because you push back when injustice happens, not because you always expect it and lay in wait for it. While you don't EXPECT it all the time, you KNOW the signs of the storm coming and how to handle it. Yet, like me, you dread having to. Who wants to constantly advocate in XYZ situation day in and day out, or in your case, every time you fly? Why can't you just have a smooth travel experience? Because there are systems at work that don't always allow for it. Attitude can make it less stressful and fearful, but not make it unavoidable.

We don't want to have to advocate 24/7. I know I don't. I get weary of it, but I know I have to to keep pushing forward. We do it (advocacy) because we must, because when a change results, when a positive tide turns, when others going after us face less hardship, we've done a good thing for ourselves and others.

I dread a particular property manager at a shopping center I complained against for not making the shopping center parking accessible and compliant. And every time I go to that center, there's a chance I'll run into the property manager as they expand, as well as the store manager whose particular parking section was involved. Still, I love a few of the establishments there and won't hide my head in shame since the changes were made. I advocated for a go again and again.

So, even though I get rock in my throat when I go shopping there, wondering if I'll have a negative interaction (usually a mean remark or overheard grumbling or sarcastic "What can we change for you now, Ma'am?), I still go. I suck it up, because I damn well want to shop there. I have every right and now the opportunity to with better access. Still, I want to go without incident. Doesn't always work out that way, though.

Without risk, you get nowhere, and I'm glad you risk every day to live out loud and share it with the rest of us readers. The rewards and lessons we all learn outweigh the negativity creeps cloaked in the be more positive and it won't happen excuse. You're right. If being more positive worked ALL the time, women and other minorities would have been free and able to vote a hell of a lot sooner.

Life doesn't change on a dime and a quick rendition of Kumbaya. But, we can learn from those fearful moments to be a little stronger -- not ignore it may happen, but know we're empowered enough to face it and keep moving with our head held high, making change as we go along, bit by bit.

Bite Two said...

I'm sorry, Dave. You work hard at creating a safe place for others, your honesty's part of that: it's a courtesy which ought to be returned.

Pain and fear are terribly real things. Even apparently groundless fears deserve respect and gentleness: those well grounded in difficult experience, all the more so. If only we were all more conscious...

Unfortunately, we can be far from conscious, or consciously cruel. So the internet (the world) isn't safe: the safe places we create are partly illusions. I believe they're highly valuable illusions, so long as we remember that it is illusion (perhaps that's something we should remind one another of from time to time), and proportionately painful when punctured.

I think it's necessary somehow to maintain the illusion, even though one recognises it: a bit like theatre, and more like those other things which only exist because we believe in them, 'society' and 'justice'. That just leaves choosing what one will risk in service of the illusion.

I'm sorry you've been hurt: you, we all, deserve better. I hope you can find a good balance for you between safety-from-illusion, and safety by silence.

Molly said...

I'm very glad you did. I've been thinking about you all day hoping and praying it went well. You've sharpened my eyes to this stuff. When I lived in Manhattan I'd walk by a crumbling curb cut and think "That would be hard for someone in a wheelchair, or someone with a walker, or someone with a scooter". I look at the way things are laid out in a room or the steepness of a ramp and ask myself "Is that really accessible?" And it's because you've been so honest. So thank you for your honesty.

Susan said...

I'm not sure why a person ever feels like they have some kind of right or responsibility to invalidate another person's feelings and experience. I have been reading a lot about the very thing you're talking about - "invalidation". It's subtle - cleverly cloaked in "I'm here to help you and enlighten you", but whether it's used overtly or unconsciously, it's a psychological tool that makes another person feel like "less" or that there is something "wrong" with them to them to the core. It's abuse. I support what you're saying here 100%, Dave. Please don't stop being real...don't stop sharing your true feelings and experiences. If you stop, the invalidators win. And if you stop, you can't educate other victims of this form of psychological abuse that a) it's out there, and b) how to respond to it.

Thank you so much for writing this post and for standing up against it. I learned something I so often do from you. My comments may be sparse, but I'm here every day and my understanding of so many important things has grown because of your vulnerability. Nobody can "tell it like it is", and educate others while doing so, like you do.

By the way, I know you, so no-one can tell me that you are playing the victim... (I've seen you in action and I've seen your responses. Victim? Hah!) Interesting how you are right "out there" with who you are and sign your name to your feelings, but when someone decided to ride in on their high horse and invalidate those very feelings, they chose to hide behind a shield of "anonymous". It's a cowardly act.)

P.S. People who have a developmental disability are invalidated on an almost constant and on-going basis - often by some of the "best" and most well meaning, well respected persons paid to "support" them. It's time to call it out and put an end to it...

emma vanderklift said...

So upon reading this latest, I'm very sorry I didn't respond to the post when I saw it(ever notice how the most problematic stuff is always posted anonymously?). I should have had your back right away. I was upset by the comment, too, for you and in so many ways. Comments like these are part of an individualistic mindset that I am increasingly cranky with. The idea that everything that happens to a person is something they brought upon themselves in some way or could correct with "the right attitude" carries a kind of slippery violence and unfairness that is often hard to get at, because it comes couched in the idea of "personal responsibility" and "positive thinking".But really? It's just garden variety nasty victim blaming. Forgive the finger bunnies - they are there to imply sarcasm and outrage. Grrr. Sorry you had to read such patronizing and mean spirited drivel.

Andrew said...

I too was taken aback by the anonymous commenters yesterday. It seems like nothing more than denial of the fact that abject prejudice and discrimination are real and right in front of us every day. It's like the silly ads that state, "The only disability is a bad attitude". No! No matter how positive our attitude, the truly disabling factors --- discrimination, pejudice, and hostility --- are there to slap us in the face on a regular basis. When someone repeatedly jabs you in the eye and you finally say "Ouch!", you're not playing victim. It's real, anxiety is a valid response, and it's not some shortcoming of your "attitude".

Jayne Wales said...

On that law of percentages there will always be a few people who will not " get it" there are those who can be educated out if discrimination and others who won't know those small murders everyday amount to something. Dry big and belittling. It can come from areas you would never imagine it. People's own mothers for example, given 5 minutes, can destroy every bit of self esteem one has cranked up so gradually. You now feel hurt and exposed but who by Dave? Comments from a " no mark or an also ran" in today's far better world of compassion and understanding. You never come the victim or anything resembling that. Just delete those comments, scrunch them up and put them in the bin where they belong. Move on from such a stupid thing to say and know you are so well regarded and liked that those anon comments are unadulterated crap! Not worth anyone's time. Yes very hurtful I agree and maybe this is bad advice but it us coming from someone who admires you deeply.

Flemisa said...

Am important reason for my reading your blog is because you are honest and open and you hold a mirror up to my actions and reactions.
How do I deal with people "different" from me? I hope with the same respect that I want but I need your viewpoint to challenge me.
sometimes I accept a reaction from others that I should be challenging. You help me validate why it didn't feel right.
Stay honest please. Speak up, please. Speak from your point of view. We need to hear to learn and we need to be challenged as your response challenges us also.

(not sure I am making sense but have to respond in some way. Mothers Day without a son is hard.)

Rachel in Idaho said...

I was going to come back today and respond to those comments as I was far too upset by them yesterday to do so in a civilized manner.

It's not a matter of "looking for trouble", anon, if you are reading this. It is more a matter of trouble being flung at you over and over and over again until you are surprised when it ISN'T. It's not like looking for one tiny incident and blowing up about it, it's more like a billion tiny incidents plus a few big ones thrown in on top of them, all the damn time, but then it's our fault when we find that upsetting??? I don't think so!

I will not let you blame Dave, or any of us, for what we have experienced at the hands of other people. Traveling when disabled can be a nightmare, to the point where it's a surprise when it isn't. THIS IS NOT OUR FAULT.

I'm sorry I didn't say something yesterday, Dave, really I am. This particular troll pushed my buttons to the point of incoherent anger, and obviously pushed some of yours too.

Colleen said...

Dear Dave:

One of the things I admire about you is your honesty and willingness to share who you are in your writing. After those hurtful comments I can see how you might be reluctant. But I hope you won't be.

I can't even think of how to describe the comments. Insensitive doesn't even come close. I do think that they say way more about the commenters than they do about you.

I am glad that you posted this.


Kristine said...

I usually read the comments to your posts, but yesterday I didn't. I think I felt the anxiety and fear so strongly (remembering all of my own terrible air travel experiences), I wanted to spend as little time with that post as I could. Sorry I didn't see the comments and offer anything more supportive...

I do want to use this as another opportunity to thank you for all the words, experiences, honesty, and vulnerability you share with the world. It's helped me so much. Thanks to my daily dose of Dave, I feel like I've become much more straightforward in how I express myself about my own disability. I used to try much harder to cover up as many of the effects--physical and emotional--of my disability as I could. I tried to pretend that nothing really bothered me. It's exhausting to keep all that in and put on a happy face. Slowly, I'm becoming more ok with admitting my weaknesses, stating my needs, sharing my vulnerabilities... Sometimes I get stung for it, but most of the time I feel like people respond well to the honesty. The stings really hurt, and then I instinctively clam up tightly again. But seriously, thank you for your example, and helping me learn to better relax and share my own disability perspectives with the people around me. It helps me to deal with situations better, and helps other people to relate to me.

Maggie said...

You've opened the eyes of so many of your able-bodied readers (or those of us who can 'pass' for able-bodied, at least on a good day) to the hundreds of able-ist slights, deliberate as well as unconscious, that exist in a world where barrier-free design is still seen as a frill, and where people whose abilities are labeled 'different' are always assumed to be less in a hurry that the TABs among us. I'm so sorry your Anonymous trolls were so unkind yesterday. Your loyal readers appreciate your honesty so much.

Anonymous said...

Hope in many shapes and sizes.

Dear Dave,

tonight I experienced the feeling, that there is so much hope in this world. Hope that one day all the predjudice hedged towards people based on their difference and appearencens will be gone.
And I formyself even with all the difference that is brought upon my by my chd like a tyring cloak I felt it was easier to breath and to hope. And I shared it with tenthousand of other people in all of Europe.
Because tonight at the European Song Contest 2014 a crossdressing man/woman with long hair and a beard won!
Yeah to Conchita Wurst, yeah to different appearences and different needs! Yeah to human diversity!

PS. Dave, you do not need to publish this. If you want to it is just for you. Hugs Julia

Anonymous said...

This might be slightly off the topic, but being a victim isnt a personal weakness, its simply the word for someone whos being/been victimised by another person. We shouldnt use the word victim in a shaming way because shame is what keeps victims silent. We know words matter, this one does too.

*If* Dave was talking/ acting/ responding "like a victim" that still wouldnt make him responsible for other peoples bad treatment of him. Thatd be like telling a woman if she acts like a victim around men she can expect to get raped because shes bringing it on herself.
And just like a woman can act confident and happy and still get raped, Dave can have a positive attitude and be a total turn the other cheek saint and he'll still get treated badly and have unnecessarily draining interactions because thats how the world is for disabled people today.

Not just for the odd unlucky few but for the many,day in day out,over and over to a point beyond tedium. This is our lived and collective experience, and sadly other peoples denial of that reality doesnt make it any less real.

Unknown said...

Everything you said was correct. There are always people who accuse us of looking for problems or creating them. A liberal, Caucasian friend who grew up in the segregated South is greatly aware of racial prejudice, but when I relate incidents of prejudice against me and my service dog she accuses me of misconstruing the situation.

Funny, once again, just recently, a restaurant owner told me to take my dog and leave his establishment. What did I misconstrue?

Unless you have been persecuted, discriminated against, or hurt by someone I don't think you have the right to tell someone else they've "misunderstood".

B. said...

I know it's often tough because I live it. I come back to your blog, Dave, because I feel less alone. Over the years I have encountered crips who don't even realize they are being treated that way, don't understand if I try to explain it to them. I felt sorry for them but I can't be around them. Thanks for writing, Dave.

Maryclare Lambden said...

Please keep your wonderful openness on this blog. I understand that it is a personal space where you especially want to feel safe, and mean anonymous remarks are even more hurtful here than in some public space that is not yours. But most of us who read you deeply appreciate your honesty. Probably the only difference that is less accepted in our society than fat is facial oddity. But then be glad you are not in Nigeria, where fat would not be a problem. Your morning transit pal, Maryclare

Penelope said...

I didn't read the comments on the post about flying. I did consider commenting because I certainly hope the trip is going better than you were prepared for! I have had good experiences with San Fransisco Airport so hopefully yours will be just as good.

I do want to apologize because I realized that some of my past comments on other posts may have sounded closer to victim blaming than I've ever intended. I'm very sorry if they've come across that way. I'm going to try to make sure I'm more clear in the future.

I've always been impressed with how honest and vulnerable you've allowed yourself to be here. It's far more raw than the majority of blogs I've read. I hope that the inappropriate comments don't prevent that from continuing, but I'd rather you choose to protect yourself more by not sharing some of the more vulnerable bits than for blogging to stop being something you do because you enjoy and want to.

wendy said...

I value your honesty greatly and I understand how vulnerable it makes you when you put your feelings out there.
I also know what it's like to identify homophobia or sexism and have another person try to tell me that I'm seeing things that aren't there.
I'm sorry that happened to you, Dave.

Liz said...

(((Dave))) I wish you could feel safe expressing yourself however you want to on your blog. I support your doing so, and hope that the many many of us who support you drown out the noise of the jackasses.

Anonymous said...

[Leaving a comment now because I wish I'd left one at the time I read the previous post.]

Dear Dave -- one of the reasons I read your blog is that you are (I project) so open and honest about your experiences and how they affect you. There's a clarity to what you write and how you express yourself that I value greatly.

Given that openness and your willingness to discuss painful issues and vulnerabilities, I guess it's not surprising that some people misinterpret it and think that they can or should tell you how to live or think or feel. Disappointing, but not surprising.

I hope the sting of those unskillful and unkind comments fades quickly and that you feel able and willing to continue blogging as openly as you do. And I very much hope that my fellow Bay Areans welcomed you appropriately and helped make your visit an enjoyable and productive one.

Anonymous said...

I don't have much new to add, just "what they said". Thank you for sharing yourself so openly. I read your blog nearly every day and appreciate it so much. Don't let the shamers stop you.