Tuesday, September 1, 2009

Diane Arbus is rolling in her grave.

Diane Arbus was a famous photographer who had a niche of taking photos of "outsiders". This includes circus people, and we're talking 1940's so think "bearded lady", "serpent man", "Siamese twins". She also has a huge interest in people with disabilities. She photographed them in a respectful light, not exploitative.

So me and my dad went to the MOCA (Museum of Contemporary Art) to see a retrospective exhibit of her career. I was really enjoying it until this happened.

My dad and I were looking at a photo of a group of people with Down's Syndrome (see image above). I should explain that I have little control over my mouth (hence the no talking) and so I tend to drool. Not a big deal for me, its just part of who I am. However, as we were looking at this beautiful photograph, a museum guard walked up to my dad and said (are you ready for this?) "She's slobbering....She's slobbering all over herself..."

The guard was frantic (I'm still not really sure why). My dad had a great comeback. He calmly said "Yes, I know she drools." Then we walked/rolled away.

Now there's a happy ending to this story. My dad wrote a letter (I was 12 at the time or else I would have done it myself) to everyone who sat on the board at the MOCA explaining what had taken place. The result was mandatory disability sensitivity training for all the employees and I got to have lunch with the head of the MOCA which I thought was pretty cool.

I'm sure the guard meant well, but damn. He could have chosen his words a little better.


  1. You never told me that story! Crazy. I'm glad that your dad had such a great comeback, and that something positive came out of the whole experience.

    Also, so much <3 for Diane Arbus. She was a really stellar photographer.

  2. Love the photograph. Should the figure in the foreground overheard the remark, I can imagine her doing a 180 at the guard. Ha!

  3. Here's one for you....

    Bank Asks armless man for thumbprint, then refuses to cash his check:



  4. Just wanted to say that your blog is terrific! I found it because you were mentioned on Facebook by Bitch Magazine. I was an assistant for a while to a man who is mostly blind and partially deaf. To me, he was just Alan, a guy with a great sense of humor who didn't see so well. So I was always surprised by the way people treated him when we were out in the world. Like making eye contact with me as though he wasn't standing right there. If they asked me something I would turn my whole body toward Alan and wait for him to answer them. And if they still didn't get the hint, I would say something like, "Sorry, I'm just his chauffeur." :) Anyway, keep up the good work, Eva.

  5. Your blog make me laugh, then gasp in horror, then laugh again. Keep writing, you are kicking some serious ass here.

  6. Nice start to the blog, definitely looking forward to more. I would be inquiring as to how to attach a taser to my chair by now in your position. Keep it up!

  7. I love this blog. Bookmarked.

  8. I just wanted to thank you for posting your blog. I tend to be kind of a social idiot, and getting some perspective really helps. You are doing a great service!

  9. I just came across your blog while I was viewing "Popurl's". I am in my late 50's and was diagnosed with Tourettes Syndrome in my late teens. I have gone through life explaining myself away to all those bizzare questions.....are you sick, why are you coughing so much, do your eyes hurt, you are blinking a lot, etc etc. Recently I had to spend 3500 for a lawyer to defend my ADA rights (and I am a civil servant for state government). I have had to attend numerous mandated classes on dealing with all types of current politically correct issues yet, when dealing with me, they didn't get it. I so very tired of hearing TS being the butt of many popular comedians routines, hearing it as a "laugh" line in the movies and on TV.
    I wish people would just "Deal with my disability"
    You keep writing, I will keep reading, maybe they will begin to listen

  10. i'm very impressed by your articulate writing and the strightforward manner with which you describe your situation and thoughts about it. it's good writing, regardless of context and cause, but thank you for addressing these issues with such intelligence and humor. three cheers and "more power to ya!!"

    ps. i'm curious if you have any pets. there have been some interesting studies with animal interaction for people with various disabilities or other unusual situations.

    anyway, keep up the great work and lots of love.

  11. Hi Eva-

    I came across your blog through a link at reddit.com. I don't know anybody with a severe disability like yours, but it has been interesting to read your entries nonetheless. I'm sorry to say that I probably would have had preconceived notions about you before I visited your site. Consider me educated.


  12. Jeez. Rude much? My cousin brought a friend with CP to Thanksgiving dinner... it took me about three seconds to get through: (a) She's drooling. (b) She clearly can't help it. (c) She seems like a nice chick with interesting ideas. (d) I can ignore the drool easily enough; it's not actually that big a deal.

  13. I'm so glad I stumbled upon your blog, your perspective gives me new insight and appreciation for the simple things I take for granted, I follow with much anticipation this blog of yours!

  14. yikes--I can't say I would've replied with the same dignity as your father. my version would've ended with me getting very shrill and shouty, and someone's head through a portrait.

    got a heads-up about your blog from mark at the 19th floor (www.the19thfloor.net), and will for sure keep reading. thanks so much!

  15. I think maybe your Dad's letter had a longterm impact. A few years back MOCA participated in an ADA Title III stakeholder's group with my organization. It was tough getting pubic accommodations to the table to talk about the ADA, but they were happy to join in. And, I recently received an email from them wanting information to give to a new staff member. They're thinking access.

  16. twitter please. arbus is a master. her images were very horizontal with disability, not above or below. her biography by patricia boswell is FANTASTIC. hugs, sistah.

  17. Hello Eva,

    I found your blog through the Bitch.com article and was immediately captivated. Your humor and style of writing is wonderful.

    Looking forward to reading more.

  18. Your blog rocks. I found it through en|Gender (myhusbandbetty.com) and I will be adding you to my favorites. Thanks for your stories and videos.

  19. I was reading the Bitch Magazine Blog and came across your site. I really love the way you write. I'll definitely be bookmarking this.

  20. Your blog is AWESOME. I was directed here from a chatroom on the Post Secret community. (:

    I just wanted to link this in case nobody had ever heard of it. It's the Able-Bodied Privilege Checklist; it's a list of the ways in which able-bodied people's lives are accomodated more than the needs of those who are disabled.


    The ones that stuck out to me most are "I cannot be assured people won't make assumptions about my mental capabilities based on my physical capabilties" (I'm guilty of this on at least one occasion) and "This point may be arguable, but I have seen few pieces of literature on able-bodied privilege," and "I will be asked to speak on behalf of all disabled people."

    I am glad you are both adding to the literature on able-bodied privilege and speaking on behalf of disabled people... regardless of the fact that it's sad we have to have these conversations at all.

    I think sensitivity training is good, but only adds more to the "other"ing of minority groups as a whole... we need to start representing minority groups as PEOPLE and not daily lessons. Bleh.

    Will definitely keep reading.

  21. I've enjoyed Arbus' work at the state schools very much, albeit in book form -- seeing them in museum must be a trip.

    Enjoying your blog very much. I used to work for Ruth Sienkiewicz-Mercer, a writer and advocate for rights for the disabled -- you write the way she spoke. She would have loved this blog.

  22. Read about your blog on metafilter. With all the great press you are getting, wordpress might need to start adding more servers. I, too, am subscribing, and look forward to reading more about your challenges with people who don't understand but also just about your life, and your successes. Even those of us who try to understand, who as much as we know how, treat everyone the same way, are still ignorant of many of the challenges you face on a daily basis. I noticed on your first video, for example, that your aide was able to anticipate your words after just a few letters. Knowing you well helps in this, I'm sure. Hearing about that process would be really interesting. I'd love to hear about the kind of things/experiences/people that have been *successful* in helping to make your experiences as normal as possible. What are people doing right?

    I have a dear friend with Parkinsons who lives in a nursing home. Recently he dictated a letter to me for his friends and the employees of the nursing home. At its core was a basic plea for respect for his personhood--one example was a request to be included in discussions about whether or not he should be allowed a straw with his beverages. He felt he had so little control.

    I hear you, and I'm hoping for regular posts from you to remind me step out into the world with kindness in my heart.

  23. Great story Eva. I agree, it's rough to be on the receiving end of "disability sensitivity training" but this shit does happen and look how you turned it into something good (a great story).

    I have a good friend, David, who has CP, is quadriplegic, in a power chair and has dysarthria (with plenty of drooling). We used to travel quite a bit together and often at restaurants wait people take one look at David and turn to me and say "what does he want?" David and I have learned to shuck it off but occasionally when we're feeling frisky we handle it like this:

    "What does he want"

    I look down, don't answer.

    David says "He's deaf, he can't hear you."

    The best part (for me) is that to cement the point he generally pays for the meal with his Amex Gold Card.

    By the way, I drool all over my pillow at night and I don't have CP.

    Be well and keep up the great work.

  24. We are responding to your blog in general.
    Eva, this is a great site! Your writing is insightful. Keep on doing your thing... it's a much needed perspective.

  25. Thanks so much for your thought provoking blog.

    I have been acquainted with the issues surrounding disability for a long time. My long time partner has a disability that is somewhat obvious. We rarely talk about it. As far as he is concerned, it is not a subject for discussion. It is no one's business but his own.

    I noticed that through your writings, you recognize that sometimes people are well-intended no matter how ridiculous their comments. My partner particularly hates being called inspirational, or a gutsy-guy. We have had the intent argument and to him it doesn't matter. It is interesting to see another perspective.

    Some people in his professional and personal life have insisted he "talk about it" and let them know exactly what the problem is. The way I see it some people care and some people are just nosy. Partner sees it as intrusive and can get angry about it. He gives off a vibe of denial when he acts like that and people who know something is up can feel hurt by his anger.

    I know his disability has been used against him by kids when he was young and by extremely competitive adults who will take any advantage to get ahead.

    I have witnessed how hurtful negative and positive treatment can be for him. For now, I just want to read your bog to listen and learn.


    I do respect his boundary of not talking about it but as a long term partner I wish he would talk to me. Then again, it's not about me.

  26. Great blog! My 3-year-old son is in a powerchair and I'm constantly trying to figure out how best to deal with the various people we meet each day--from the downright rude starers to the well-meaning but terribly bothersome "atta boy-ers"--in a way that doesn't make him feel even more self-conscious but shows him he doesn't have to take crap from ignorant or insensitive or clueless people. I'll continue to follow your blog to help me understand my son's view of the world.

  27. I thought you might like this, on dealing with "micro-inequities":


    "Every time I post an anecdote about a possible situation in which I may or may not have been treated in a way that could perhaps be described at least in part as sexist, I always receive one or more comments:

    * giving alternative interpretations of the incident,
    * informing me that I am too sensitive,
    * wondering why I am offended by such a minor incident, and/or
    * telling me that I must hate men (or asking me why I hate men so much)."

    It strikes me that a lot of the comments you are getting here (and the things I see people saying elsewhere about this site) fall into these kinds of categories!

  28. That was an interesting article. Thanks for sharing.

  29. Oh man. I could understand if he went "Is she okay?", and it does sound like he was concerned, but there isn't much more of a wrong way to go about it than the one he chose.

    Thanks for mentioning Arbus' photography. I'd heard her name but, not being a photo person, didn't know what kind of work she did... The women in that photograph look so happy and natural you can't help but smile. Must check out her work. :)