Monday, November 21, 2016

Down Syndrome: Finding Hope in Hurt

I was offended last weekend.  I walked into a coffee shop and struck up a conversation with an older gentleman who was putting stickers on the paper bags that you scoop coffee beans into.  Full disclosure: When I'm out in the community, I'm always looking for prospective jobs that Leanne, Josie, or another individual with special needs could do and that's what drew me to him.  We started chatting at his daughter walked up and introduced herself.  Somehow, in conversation, I told them that I was on my way to a special needs conference and the older man interjects "That's what I need!"  It was intended to be a self-depreciating joke but it obviously missed the mark on the audience.  The daughter awkwardly jabbed him in disapproval and I'm sure the look on my face was a very clear mixture of shock and disappointment, without so much of a glimmer of amusement at his attempt at humor.

I walked away bitterly thinking 'Well, Leanne will NOT be working there!' 

That one offensive little comment haunted me all day.  It kept playing in my head, over and over, to the point where I was mad at myself because I just couldn't let it go.  And here's the frustrating part: Leanne and Josie receive countless positive comments.  Everyday, they inspire, encourage, and amuse people.  They truly bless peoples' lives with their presence.  So when the reception to my sister and daughter is so overwhelmingly favorable, why is the one thoughtless, ignorant comment that stings the one I can't get out of my head?
Because I felt like this was having a negative impact on my psyche, I challenged myself to think of it differently.  I told Travis about the comment over dinner and he laughed out of shock at the gall of the old man and he found humor in the irony that the joke could not have been targeted to a more hostile audience.  I told Travis, "But otherwise, he seemed like a nice old man.  In fact, he probably would have liked Leanne if she worked there.  I bet he would have been very kind and patient with her.  He just hasn't had experience with people with special needs.  He doesn't know better because he never had a chance to learn - that's not his fault."  

It was still a conscientious effort to stifle the sting and force myself to try and view the situation with the benefit of the doubt and I was incredibly proud of myself for trying, because I knew holding on to the hurt wasn't doing me any favors.  

I believe so much has changed generationally to support inclusive attitudes towards individuals with special needs that this type of unintended ignorance is fading (this is me giving the gentleman the benefit of the doubt that his comment was not intended to be malicious or hurtful).  I believe that the kindergarteners in Josie's class will not grow up to make jokes like this.  I believe they will not grow up to say the "R" word.  They know Josie.  They know better.  In the era that this gentleman was educated, he certainly didn't have any children with special needs in his class - probably not even in the same school.  

Hubert Humphrey's (Vice President of the U.S. under Lyndon B. Johnson) granddaughter had Down syndrome.  I found an article written by Hubery Humphrey's wife, Muriel, in the Chicago Tribute written in 1971 about their granddaughter, Vicky.  Let me warn you: the outdated terminology is jarring.  But realize that it was 1971.  If you can wade through the terms that are now considered offensive and extract the heart of the article, you'll find that the Humphreys' desires for their granddaughter are very similar to what parents of children with special needs still want for our kids: to be accepted and appreciated exactly as they are.

I challenge you to read the rest of the article, "Our Vicky is Retarded," (Cringe!  I know!) and find parallels in the sentiments expressed and the objectives that we, as advocates in the special needs community, still value.  At the end of the article, Muriel talks about how she was contacted by a new mother who had a baby with Down syndrome and the mother said that by seeing Vicky on TV and by hearing the Humphrey's message of appreciation and love for Vicky, that she was incredibly encouraged about her daughter's future.  That underscores the importance of our advocacy efforts.

There will always be uninformed people who make offensive remarks under the guise of humor, but with exposure an education, the next generation will be enlightened and more accepting and kind.  I truly believe this and I have so much hope for the positive change that we will continue to see.


  1. I'm so sorry this happened to you. Similar things have happened to me, too, so I can sort of relate to your feelings. Kinda feels like you've been kicked in the gut. :(

    When Joshua was born, 30 years ago, I remember my husband's grandfather saying, "we had a neighbor down the street that had one of them...they kept him in the back room." It was a different time for sure. Now, he wasn't saying this in a mean way. He was quietly telling another family member, reflecting about that child and that family. All the while, he was watching Joshua interacted with others...seeing the joy Joshua had for life. And, over time, Jim's grandfather learned to love and accept Joshua.

    And 30 years ago, when Joshua was born, the first words my doctor said to Jim were: "we think your son is mongoloid." CRINGE-WORTHY.

    Over time, I watched Jim's grandfather, Jim's Dad, and even my doctor...learn to see Joshua as a PERSON, and not as a disability. And I like to think that Joshua has changed their perceptions and opened their eyes.

    The old-man-at-the-store? That just shows us that our work is not done. But I'm pretty certain he would fall in love with Leanne and Josie if he had the chance to meet them. I mean, how could he not? :)

  2. I want you to be right. I would pray that the next generation wouldn't use hurtful language and marginalized people who were differently abled, but I believe this is a fallen world, too. My daughter goes to a private Christian school. I hear the "r" word all the time there, including from teachers and from parents. One year they printed it in their year book, on the senior page, under nicknames they were sometimes called. Everyone thought it was funny. I pitched a fit. Asked others in the DS community how they would feel seeing this in their child's yearbook and the school got many emails and phone calls about it, from the special needs community. But people within the school and church associated with it told me to "get over it, because they just didn't see the big deal". And these were people who fussed over my sweet child every time they saw him. But they basically told me I was wrong, and I should just be grateful that he gets fussed over, but they still saw nothing wrong with their language, and couldn't understand why my daughter would be hurt hearing that word at school. The world has lost it's moral compass. There will be good moments, and good people, as there always is, but I don't believe people really "get it" if they have never known and loved someone who is exceptional. I didn't abandon the school or church either, because I go for God, and am aware we are all sinners, but it stings to know that many of these people hold my child and people like him in such low regard. Fallen world...

  3. Please, please believe me when I say I mean no offense, but I don't really understand what was so offensive about his remarks. My mother, at this point in her life, could probably benefit from many things that would be discussed at a special needs conference, and I could see her saying something like that in response to hearing you were going to one. Can you help me understand why it's so offensive? My mom, at this point in her life, does have an intellectual disability, of a sort, she has slight dementia and every day I'm questioning whether it can still be described as slight. I realize I have not walked in your shoes, and that's why I'm reaching out for clarification.

    1. You are missing the point of the article. Being born with Downs is not the same as having dementia in your old age. You need to educate yourself and you need to educate yourself about dementia so you can understand what is happening to your mother and know how to help her and treat her with dignity. Children with Downs just want to be accepted like any other child and should be treated with dignity also.

  4. Beautiful. I need this today, because I feel a little discouraged by some news ( Please, keep you advocacy work, there is a growing feeling among the general population that women who don't terminate a Down syndrome pregnancy are irresponsible towards the child him/herself (because they think he/she will live a miserable life), her family and society (because they think he/she will be a burden to everyone). Only familiarity with people with Down syndrome can change that. Thank you.
    Sorry for my poor English :(

  5. I feel the same way when people say they are "so OCD" about cleaning, or in response to me talking about being diagnosed with ADHD at 40 yrs old they say "everyone has a little ADHD in them," or pretty much any off-the-cuff remark about mental illness. Whether they realize it or not they are making light of something that is very real and serious for those that experience it. I try to use it as a teaching moment, or give them the benefit of the doubt that they're from an older generation and just done know better. But when they refuse to see my side of things, all bets are off. I don't expect everyone to realize what is offensive to every group to which they don't belong, but I do expect them to be willing to learn

  6. Please don't allow words to affect you so deeply. The old gentleman probably meant no harm. I feel our society is becoming so overwhelmed with political correctness we seniors are having a hard time keeping up with all of the new "correct" terminology. So give him the benefit of the doubt. He probably didn't even understand what special needs meant!

  7. Mom24, I agree. I did not understand what was offensive about the comment the older gentleman made. And I don't think the comment from Unknown above was helpful in clarifying.

  8. The joke is belittling and offensive to people with special needs. The joke made fun of people with special needs, and Elizabeth, who in my eyes has devoted her life to advocating for these extraordinary individuals, took offense to this.
    Perhaps you aren't fortunate enough to have anyone with special needs in your life, so I'll use an example that you might understand better because I can tell you are truly trying to understand why this was upsetting to her. If a person who had been sexually assaulted heard a joke about sexual assault, they probably would not find that funny. In both cases, these "jokes" are hurtful, and they normalize that it's ok to make fun of people with special needs or people who have been sexually assaulted, that it's all just a big joke. People with special needs just want to be treated with respect, they don't want to be the butt of a joke about special needs; their loved ones want the same for them, respect, which is why Elizabeth was offended by this joke that provided a laugh for a couple of people in a cafe at the expense of people with special needs, who, by the way, did not ask for, nor do they deserve to be the butt of these jokes.