Maybe I've got the heart of Scrooge and the soul of the Grinch, but I'm not a great lover of inspirational stories of faux achievement. Maybe my real disability is cynicism because I get a sense of collusion and cruelty rather than love and support. What am I talking about?
Let me explain.
I get a lot of emails regarding various stories about disability from newspapers and magazines. Many send me YouTube videos of an inspirational nature. I do appreciate getting these, I feel the gentle nudge to write about the story on the blog even if the person doesn't specifically ask. Sometimes the story is about something I hadn't heard of and something I want to write about. Sometimes it's not. But in either case I'm glad to know.
Over the last few days I've had several people send me a story about a young man with Down Syndrome. He apparently scored a touchdown at a high school game. As I understand the story, the touchdown was made possible because the 'regular' players of both teams set it up and allowed the goal to be made. The story as told seems to be about how wonderful it was for this young fellow to get the experience of scoring a touchdown and being cheered by the crowd. There is much talk about his self esteem.
But to me, the story isn't about him at all. His Down Syndrome is an accessory to the story of wonderful young sportsmen who 'gifted' him with a moment that 'he will remember' all his life. There is a lot of talk about how wonderful these sportsmen were, how generous and kind and thoughtful their action was. And maybe these all are terrific kids. And maybe there's something wrong with me. You see, I don't get it and I don't like it.
Self esteem needs to be based on what is real not what is pretended, on the truth of who you are and the truth of what you have not on the lies that others tell of you. I don't know who the kid with Down Syndrome is, and I'm avoiding this story purposefully, but I'm guessing he's got lots of 'goods' if he has so many people wanting to do him 'good'. I'm guessing he has lots of real attributes to be proud of, so many that he doesn't need a fake accomplishment gifted by a fake moment. I'm guessing that he's got enough personal 'sugar' such that he doesn't need a life sweetened by Splenda.
These stories seem to imply that people with Down Syndrome only have accomplishments that are manufactured by others and gifted by kindness. These accomplishments make the 'story' of Down Syndrome one of tragedy overcome by generosity. There is a hint, in all this, of cruelty, somehow. As if in cheering him they are kind of laughing at him and his innocent belief that he actually scored a touchdown, in a real game, in a real play. I sense hurt coming, big hurt. Hurt that comes from being tricked. Hurt that comes from being purposefully deceived. Hurt that could have been avoided. Hurt that does real damage. I see the brakes failing on his faith and imagine him hitting the wall of reality at 100 ks an hour. I hope he survives.
And yet what truly saddens me is that the 'real' story of Down Syndrome and people with Down Syndrome is much more dramatic. The 'real' story doesn't need dressing up in costume and playing pretend.
The real story is about kids with Down Syndrome finally being given the dignity of education, learning.
The real story is about kids with Down Syndrome finally being given the dignity of community, working.
The real story is about kids with Down Syndrome finally being given the dignity of relationships, loving.
The real story is about kids with Down Syndrome finally being given the dignity of worship, praying.
The real story is inspiring. But the real story is tough. To tell the real story you have to begin, not with a bunch of wonderful, generous, kind, saintly kids, but with a society that disallowed education, community, relationships, worship. To tell the real story you have to begin, not with a kid making a touchdown, but with the kid setting foot in school at all ... you have to tell of the battle of parents, of self advocate groups, of a movement to include kids with disabilities in their neighbourhood schools. Doubtless there were teachers and administrators there that day that one day fought against the inclusion of kids with Down Syndrome in the school district. The real story is inspiring. The real story is victorious. The real story is about parental love, about personal courage, about the will and the determination of a people to go to school, to live in the community, to be part of the social world.
A kid with Down Syndrome makes a touchdown that isn't real and the world cheers them. Yet many people with Down Syndrome have scored 'life' touchdowns and people don't know who they are: Gretchen Josephson, Raymond Hu, Edward Barbanell, Sujeet Desai, Jacob Halpin. Many people with Down Syndrome have scored 'dream' touchdowns having gotten jobs, having moved into Independence, having gotten behind the wheel of a car, having married the love of their lives. But these stories are about personal victories by people with disabilities, not of victories as the result of the charity of warm hearted normals. These stories ask to change perception of disability rather than wallow in the superiority of normalcy. Not such a movie moment hmm?
We were going to the grocery store, Ruby was bubbling with energy. A young woman with Down Syndrome was on her way to work in the store as was evidenced by the uniform she was wearing. Ruby was asking me to race her but it was uphill. The woman with Down Syndrome said to me, as Ruby's obvious care provider at the moment. 'If you like I'll race with her up to the door.' Ruby yelled, 'Yes!' before I could. I simply nodded, glad that Ruby would have a distraction. The two of them raced towards the door. Both laughing. I saw that the woman checked her step and allowed Ruby to get there first. Ruby got to the door and screamed, 'I won!' The woman with Down Syndrome waited with her for a moment as we caught up.
I thanked her and Ruby said, 'I think you let me go first.' The woman blushed and said, 'I was just giving you practice for the day that you don't need help to win races.' Ruby giggled and the woman waved.
No cameras. No crowd. But ... TOUCHDOWN.
Oh, what a rich post. How I agree. I applaud the kind impulse of those young sportsmen for there is a vast shortage of kindness in the world, but in this case it was misplaced.
ReplyDeleteI grew up in an era when girls were socialized to be dumber than men; to let them win in order to make them feel good. Yuck! How wrong was that?
There are so many real and valid admirable qualities and achievements in people and we need to celebrate those, not patronize them. I would hate to be patronized personally, and I believe that the young man who scored the touchdown would too, if he realized what had happened.
How much better if people had "just" given him the warmth of friendship.
Perfectly written. Perfectly said. Thank you for writing it. Stories like these have been bothering me for years. Now I know all the reasons why they bothered me! :-)
ReplyDeleteHmmm...this post really made me think. And, I think, this is the first time that I've ever disagreed with one of your posts. Actually, I'm not even really 'disagreeing'...more 'wondering'. I may not be popular amongst your readers today, but I know you don't mind getting honest feedback, so here goes.
ReplyDeleteI wholeheartedly agree that these 'fake' wins provided to people with disabilities...well, they make me uncomfortable. As Tamara indicated, I wasn't always sure just why they did, only that there seemed to be something wrong about them, something dishonest, something potentially cruel. And today's post really helped me to understand what it was about them that felt 'wrong'. However, as a mom, I think back to all the times I may have done something similar with my kids. Picture this: my 3-year-old shows me a picture of a tree. I know this because he tells me it's a tree. It looks nothing like a tree, but I tell him that it's the most beautiful tree I've ever seen. This is done out of love and a desire to encourage the mini-artist until his trees really DO look like trees. Or, as Ruby's racing friend said: "I was just giving you practice for the day that you don't need help to win races."
So while stories like the one you mentioned really do put me off, I'm left wondering if there's really a difference between that situation, and the daily exchanges between a parent and child where we tell a 'little white lie' in hopes of building confidence. Or for that matter, if there is a difference between the 'win' of the boy in the story, and the 'win' that Ruby experienced?
I'm not trying to stir the pot here, I just found myself questioning and wondered if I was the only one who saw it this way. Dave - I'd love to hear your feedback on this. And now that you're being more 'present' on the comments board (which is great, btw), I'm looking forward to it.
Brenda, of course I don't mind you bringing in another point of view or asking a question! I would hope that everyone would respect you for bringing this forward. I do see a difference somehow between how we interact with 3 year olds and how we interact with 13 year olds. There is a difference between encouragement and 'trickery'. I have pictures on my fridge by both Ruby and Sadie ... and here's the thing,to me they really are the most beautiful 'trees' I have ever seen. Because they were made especially for me. We begin by rewarding effort over accomplishment, we get to accomplishment through effort but there will be a time where accomplishment becomes more important than effort. I still feel that the 'touchdown boy' was misserved by this act of generosity. I still feel that one day he will be hurt realizing it. Ruby will never be hurt, ever, even if 20 years later she sees her little girl picture still on my fridge and still hears me gushing about it.
ReplyDeleteI think this is absolutely spot-on, and Tamara, thank you for pointed this out to me. Brenda, I think there is a difference, and I think it is this. As Dave points out, stories like these are ubiquitous. They are the stuff of never-ending e-mails and made-for-TV specials, and they make people outside the disability community feel good. I think that is the problem though, and the locus of the difference. Let's first assume the football story is even true. I think that by sending each of us the story (I know I've had a dozen well-meaning friends and colleagues send it too), our friends now feel "done" with their good deed for the day. They have discharged their obligations, shown themselves and others that they are people with big hearts and of good conscience, and then they are done. Ruby's grocery-store friend, on the other hand, did not simply click "forward." She actually reached out to Ruby face-to-face and in real time, face-to-face. I have no doubt she would do so again. In fact, I would wager that she lives her life this way - open to and accepting of Ruby, my daughter Holly, Tamara's son Shawn, and anyone else who crosses her path regardless of how many chromosomes they carry. This is not exceptional behavior, but routine. The football game makes it on the internet precisely because it is exceptional. It is the exception, as they say, that makes the rule. I have always thought that this is a curious expression since it seems to contradict itself, but here is a place where it makes perfect sense. Because people can point to this one example, they think all is right with the world and that there is nothing more to do. It is their free pass, and I don't think giving free passes is a good idea.
ReplyDeleteGreat post. Someone sent me the news story with the comment "Isn't this precious?". I had the same reaction you did. This boy wasn't being included. Everyone knew what was going on except him. And you're right, the article wasn't about him at all. They didn't interview him or describe him at all. Don't even get me started on the fact that he was referred to throughout the article as the "Down Syndrome football player." It was obvious that for the author, that was the only thing that defined him. His disability was used as a hook to make readers admire the "normal" players who helped out this "poor dear."
ReplyDeleteI agree with you Dave....it reminds me of a childhood memory where I was given a position of prestige and then finding out a few years later from a friend that there was different motivation....I remember the shame and the strong reaction of not being lied to 'for my benefit'.
ReplyDeleteWhile these kids may have thought they were supporting their friend they haven't gotten to the true meaning of inclusiveness and they are receiving more glory than their friend.
Thank you Dave for articulating so well why those kinds of posts make me feel uncomfortable. I always felt that I was missing something because those types of stories did not make me feel warm and fuzzy. In fact they usually raised more questions and concerns.
ReplyDeleteKeep challenging us Dave to look at how we treat all people and maybe some day we will live in communities with capacity to recognize real gifts and talents instead of manufactured ones
Hmm. Maybe this is because I have no head for sports but I pretty much enjoy stories of that kind.
ReplyDeleteA girl at the summer camp I work at sent me a newspaper clipping about herself during the school year. She was in high school at the time and was on the basketball team and has Down Syndrome. The story was about how she got to play when usually she was warming the bench, and everyone passed to her until she scored (and it seemed like the other team put up a very weak defense.) She knew they were all colluding with her and that they were "letting" her score. But she was just really chuffed to get a lot of play time and score baskets for her team plus have her picture in the paper. She said friends help each other.
I think most people would comprehend what's going on, I bet the touchdown kid was not tricked and he understood what happened (if the story even really happened.) To me it just seems like an example of a person with a disability getting reasonable assistance to do an everyday activity. I guess to me, all touchdowns are faux achievements because I don't get sports and it all seems trivial and boring. So having an athlete with a disability score a touchdown seems cooler to me, even if it is a bit contrived. In the U.S. anyway we have a long and glorious tradition of throwing the game, fixing, etc so it seems OK to me. Definitely newspapers always sentimentalize and miss the point whenever there's a story about a person with a disability doing anything.
Thanks, Dave & Duff, for your responses. I think I understand better now. As I said, I understood in my 'gut' that there was just something wrong about dropping an unearned win into someone's lap, but couldn't put it into words or explain how it was different from what we as parents do all the time. As I tell my kids - any day that you learn something new, is a good day. Thanks for giving me a good day today! And Dave, it wouldn't surprise me at all to know that you still have some of Ruby's artworks twenty years from now. My oldest is 23, and I still have a box full of stuff he made back in kindergarten. I'm a sentimental old sap and proud of it!
ReplyDeleteI was a Home Health Aide for 16 years before I retired. I remember one client, a young black man with cerebral palsy. He was in a wheelchair, couldn't walk, had to be fed, barely had use of his arms for anything.
ReplyDeleteAfter doing personal care activities, I was cleaning up a bit, and noticed a trophy from the Special Olympics. I made the mistake of asking what event he had won, and his previous cheerful demeanor turned very dark. He didn't want to talk about, at all, and so I asked no more questions about it.
This was a 25 yr old man who mostly watched the cartoon channel and low sitcoms like "Saved by the Bell", but I think he knew that Special Olympics stuff was a farce. I hadn't realized that, until I saw the effect on him.
I guess it's nice to get "play time", but no one likes to be "played".
Clay, I 100% disagree that Special Olympics is a farce. I work with youth and adults affected by D.D. and I can tell you that the S.O. teams that they play on make the same difference in their lives as the "regular" teams that you and I may play on. Some of the people that I work with would never have the opportunity to participate in team sports if it wasn't for S.O. That is the reality. Special Olympics isn't pitting neurotypical people against people affected by disability and rigging the results. I've seen the ego-building that goes on and the experiences that people affected by D.D. have had as a result of Special Olympics. The organization that I work for frowns on S.O. sports, citing them as segregated activities. It is unfortunate that there are not more integrated sports experiences for adults affected by D.D. in our community, but the fact is there aren't. The people that I work with would spend a lot more time at home sitting in front of the TV watching Saved by the Bell if it weren't for S.O. I'm thankful that the opportunity exists for them to be part of a sports program, as well as something bigger than themselves. I don't see the relationship between the situation Dave is referring to and Special Olympics at all. I think Special Olympics is just people with similar abilities getting together to have fun with sports just like a "pick-up" oldtimers hockey league would be. Seems like a pretty natural thing to me.
ReplyDeleteFirst time commenting but I read and enjoy your blog daily. My daughter is 14 w/ds and in special olympics - swimming. It's been a wonderful experience - except when she is in a race with only 2 other athletes - now my daughter does have DD but she is far from stupid - she doesn't even have to put ANY effort in the race and she will still medal! AND knows it! Now my daughter races 25/50 free 50 back - 3 of the most popular races. Drives me silly when I see them do multiple races of 3 athletes.
ReplyDeleteHi Dave,
ReplyDeleteI'm a big reader, but this is my first comment. Let me say right off the bat that I enjoy your blog a great deal. I think you do a wonderful job of gently challenging your readers' assumptions and shifting their perspective without being preachy or overly sentimental. I often come away from reading feeling the intellectual and emotional equivalent of a good stretch.
I'm commenting today because I'm an elementary school teacher in the US, and I often feel like we are painted as the villains by both sides of the inclusion debate. In your post, you said, "Doubtless there were teachers and administrators there that day that one day fought against the inclusion of kids with Down Syndrome in the school district," and doubtless there were. But that's not the whole story.
Doubtless there were teachers and administrators there who had advocated for the inclusion of students with Down Syndrome: teachers volunteering to be "the inclusion classroom," teachers doing research and seeking out professional development opportunities, administrators looking for creative ways to fund training for their teachers, teachers urging their colleagues to give new ideas a chance, teachers and administrators calming the fears of anxious parents.
Doubtless there were teachers whose concerns arose from wondering about how to be the best teacher to every child in their classrooms. Sadly, many teacher-training programs still don't recognize the realities of the inclusive classroom. Teachers need time, training, and resources in order to create the best learning environment for all of their students. Inclusive teaching can be some of the best teaching, but it does not necessarily come instinctively. For teachers who've been in the profession for a long time, it can represent a seismic shift in their approach to planning and implementing instruction. Knowing that it's a shift for the better does not make that shift any less drastic.
I'm sure you didn't mean to imply that teachers and administrators only fell on one side of this debate. I know that the loudest voices from schools are often the ones speaking against change. However, I do think that there are many teachers (and administrators) for whom the move towards more inclusive practices has been a welcome one.
That said, please don't stop calling the educational system on its failures and contradictions. There are plenty. Call us on our mistakes, but celebrate our successes.
mcs
I think I can see both sides. There is the fact that people with DS, especially after a certain age, generally need to be included by planning rather than by coincidence. Therefore I have no problem with the "plot"... But the difference between kindness and charity in this case comes from the condition that it should not be overpowering and not be aiming to create a "feel-good" factor for the person who is offering it. Relationships work on give-and-take principle on all levels so I find no problem in seeing a bunch of young people who are going out of their way accommodating their friend... as long as it is done with dignity for that friend.
ReplyDeleteSorry for the multiple posts...I kept getting error messages on my end.
ReplyDeleteYeah, yeah, "Those who can't..."
mcs
@ coffeetalk - The young man I was talking about may have thought it was fun to participate, great to win a trophy at the time, but had since realized that it didn't really mean anything, since everybody wins a trophy!
ReplyDeleteI think that this young man had already hit the "wall of reality" that Dave mentioned, and realized the trophy he'd received years before had no real meaning.
mcs, I certainly have met wonderful committed and passionate teachers in the course of my working life. In no way was I wanting to demonize teachers. It was important for me, in the post, however to reflect on the fight for inclusive education. It was a huge battle here in Ontario and the vitriol about people with disabilities being in the regular school was astonishing. Parents fought so hard for their kids and then those kids had to walk into those schools ... it's a story of bravery and a real battle really won. I try to be cautious never to attach a whole group of people because when you've met one teacher, well, you've met one teacher.
ReplyDelete@ Clay. No different than many, many trophies sitting on shelves in family rooms or in the back of closets all over the world. They don't mean much after they're earned. Just proves that people affected by D.D. aren't so different than the rest of us after all. Hopefully the choice for all of us is to celebrate that the trophy is not actually the prize. The perseverance, fellowship and memories are the real prize.
ReplyDeleteI love you Dave! :)
ReplyDeleteI am so glad when others "get" this. The message somehow loses it's importance to others when it is "that Mom" saying the same thing.
HUgs to you & a Belated Happy Birthday to Joe. Hope you had a wonderful day!!!!! :)
Steph and Christopher
I'm guessing that he's got enough personal 'sugar' such that he doesn't need a life sweetened by Splenda.
ReplyDeleteI was appalled when I was reading your post, how sad that accomplishment should only be in terms of what was "given" rather than what was true. I hope he is surrounded by by those who know his true worth and tell him.
When I was in middle school (8th grade, I think), I got an award from my English teacher that was, basically, for writing well while deaf.
ReplyDeleteEach student in the class got an award for something or another, including one person who got an award simply for having excellent writing skills.
The teacher tried to explain to me that the award was for "overcoming my deafness" etc to write so well. But if she was so impressed with my writing skills, then why couldn't she have simply given me an award to recognize my writing skills, full stop? That would have meant a lot more to me. Why should the deafness be part of the picture when it just isn't relevant?
When people try to praise me for doing X *despite* Y, it makes me wonder whether they would really have been as impressed by my doing X if not for factor Y. If someone thinks I'm a great writer, full stop, then they should simply say so and not bring the deafness into it. Deafness just isn't as relevant as people think it is. And, no, this is not me denying or being ignorant of the many deaf people who don't read and write quite so well in English. The fact that many deaf people find the English language challenging isn't because they're any less intelligent or talented than I am: I know plenty of deaf people who can barely write a lick of English who happen to be able to express themselves eloquently and powerfully and with tremendous insight in American Sign Language, including some who have better self expression skills than I do, just in a different language. Deafness in and of itself does not need to be a barrier to learning to read and write well: plenty of deaf people do do it all the time. And, educators are still figuring out how to teach what is essentially a sound-based language via visual modality including sign language and don't yet have all the answers. If some deaf people succeed despite these barriers, then it doesn't mean we're "overcoming being deaf" it means we're overcoming an approach to education that isn't really designed quite right for our learning needs.
I tried to explain to the teacher afterwards why the award bothered me but this was an exercise in frustration because she just didn't get it. She thought I should just feel complimented and be proud of myself. But, I want to be proud of myself for a genuine accomplishment. Not simply for "being as good as a hearing person despite being deaf." That's a kind of an underhanded compliment, really. Sometimes I still wish I could find this teacher again and try again to find a way to make her "get it."
I hope my anecdote above made sense -- it's not quite the same thing, but reading your post made me think of this incident.
ReplyDeleteI was VERY sad to read comments from readers stating that Special Olympics is a "farce." Without Special Olympics, many athletes would have NO opportunites to participate in organized sports. Special Olmpics has opened THOUSANDS of doors, which would have otherwise remained shut and locked. Is that what we really want? More isolation?
ReplyDeleteAnonymous, I don't think and didn't think of SO in the same light when writing this blog. I think the whole subject of Special Olympics needs to be a subject of a whole series of posts some time. I am a supporter of SO and the athletes I know, and there are many, who attend.
ReplyDeleteYep. Yepyepyep.
ReplyDeleteAbout those drawings of trees...
ReplyDeleteI have a 14 year old daughter who has Down syndrome. When she was in 1st grade, the week of Thanksgiving she came home with a paper plate turkey. You remember those, right? Paper feathers glued on on side, the head on the other, googlie eyes, etc. My daughter's turkey was beautiful. In fact, it was PERFECT! Too perfect. Considering one of her biggest struggles was the effect a stroke had on her fine motor skills, and she could barely manage a scissors, much less cut along a line well enough to cute PERFECT feathers. The eyes of this turkey were perfectly aligned. I had subbed in her special education classroom before and had seen what went on, and it had bothered me. The classroom aids did far more than "hand over hand" work with the kids. They DID the craft work and the kids got to watch. Lucky them!
So the next day I attached a note to the perfect turkey and sent it back to school. "Mr. Smith, it appears that the example turkey was put into Angela's backpack by mistake. Could you send home HER turkey? Her turkey is the one that butchered and mangled, with the eyes lopsided and extra blobs of glue all over the place. I was really hoping to display HER turkey on our refrigerator for the holiday when her grandparents are here."
A couple days later, a mangled and sorry looking turkey came home, and Angela proudly showed it off. Just a couple weeks later I was walking through the hallway of her school. There were now snowmen hanging on the wall. Although they were PERFECT, the bore the names of the students in Angela's special ed. class. All except one. On sorry looking snowman with both arms, hat and scarf glued to one side of his body (where one arm should have gone), one cyclops-like eye in the middle of his face, and a triangle (the nose) on the lower body part. And there was her name too, written by herself. I know, because you couldn't tell what it said. I was so proud of that snowman!
(and now I'm gonna turn my comment into a blog post of my own. LOL)
thank you for this. what a great post.
ReplyDeleteThis comment has been removed by the author.
ReplyDeleteLeah, please let us know when you've posted this, I want to go read more. I loved what you wrote, it's perfect!
ReplyDeleteAs a mom of 6, 3 with DS I enjoyed your post and agreed with many of your posts but sometimes....you just have to let a kids shine. I applaud both teams. I am sure the young man was thrilled as he carried that touch down and didn't have his self-esteem hurt one little bit. Did you never let a child win at a game, praise them for a job that was not stellar or tell them how wonderful they are when they did an everyday thing? I did it with ALL my kids. If my guy with DS was on a football team and they let him score a touch down we would both be thrilled. Yes to all those things that have been accomplished. I have been working on inclusion for 22 years and am not offended at all by what the teams did. I think it shows how far we have come in the last several decades! susan
ReplyDeleteI love this so much! I have often feared voicing this perspective. Does it make me heartless and cold that I can't applaud this young man's touchdown? Or others like it? Am I doing a disservice to my daughter by not hoping that she encounters the same warmth and kindness within her peers?
ReplyDeleteOf course I hope she does! But her father and I are NOT handing her a damn thing. How can I demand that the world treat her with equality but then accept a gesture that reeks of pity?
And if they vote Lucy Homecoming Queen, I am going to request a written explanation as to what merits they based their choice on! ha!
Dear Dave:
ReplyDeleteThis is a very powerful post. The "normalism" implicit in such stories as the football story has always bothered me. In fact, as you say, these stories are full of prejudice and paternalism.
I love what you wrote about the victories of people with Down Syndrome - victories won because of their own courage and determination - not handed to them out of pity.
Thanks
Colleen
@Dave...thank you for this post and the discussions it's created!
ReplyDelete@Leah...I couldn't agree more about the "perfect" art that comes home sometimes. I know the para did the work, so why even send it home? It isn't an example of what my son can accomplish at school. I want the mangled snowman, please!
@Courtney...Homecoming Queen isn't about merits, it's about popularity. If Lucy is popular enough to win, then celebrate that. I know I voted for a close friend to win Homecoming King and he did...the fact that he had several different disabilities due to a car accident wasn't why he won; he won because every single person in school new and liked him for who he was (a real firecracker).
For those who are interested, here's my comment-turned blog post. Just cleaned up a bit.
ReplyDeletehttp://gardenofeagan.blogspot.com/2010/10/true-successes.html
Yes, there are times I've cheered all my kids on for TRYING THEIR BEST, or "Wow, look how much better you did that than last time!" And "You're Amazing!" because all my kids are amazing. All kids are, really. But I don't want them doing "fake" things. I don't want them to be the token special ed kid in the mainstream classroom who doesn't really DO anything in there, they're just in there cuz they law says they have to be. I want them DOING something...at whatever level they're capable. And if my kid isn't able to play regular softball because...really she can't play at that level at 14...then I don't think she should play. But she is swimming on the regular team this year! For the first time ever, her school is going to have a special ed student, one with Down syndrome, on the swim team. Angela's times are no where near competitive with her mainstream peers. And although she's only a few seconds behind, she will still come in last every race. But guess what? From our experience practice meets I know that when those parents in the stands are cheering for THEIR kid who is 10 seconds ahead WINNING the race, Angela thinks they're cheering for HER, and gets out of the pool, both hands in the air like an olympic gold medalist. It's never occurred to her that they're not cheering for her. But nobody is making any concessions for her. Nobody is "setting it up ahead of time" for her to score a winning goal, etc. There won't be any articles written about "the kid who won the meet because everyone stopped swimming to let her win". She's already a winner, and she knows it.
I was fortunate to have read the 'back stories' in the Seattle Times - how the teen's parents were concerned 3 years ago that he was 'losing his brightness ... in a slump. His smile was fading. His energy was low. He
ReplyDeleteseemed content to sit in the back of the auditorium for assemblies, ride in the back of the bus to school.
He was becoming disengaged ...' - so they asked the football coach if he would allow Ike to play for the team as his older brother had done. The coach had designed the play for the teen in practice, and the other team had already participated in the play two years earlier. His team having a rather dismal record, and the other team being historical 'arch rivals' added a little bit of perspective. And for me, the icing on the cake was: '... Recently diagnosed as diabetic, he gets help from teammates, who assist him in checking his blood-sugar levels at practice and during games. ...' As the parent of a young man with DS who developed type one diabetes when he was 7, I can tell you that is HUGE support.
Ordinarily, stories in the media similar to this one do make me cringe, or make me cranky, but for the community where it happened, it seems to have been practical down-to-earth choices that a bunch of mainstream young people made to create a couple of extraordinary moments that gave them practice for living their lives more authentically in adulthood. Our neighbor saved the second newspaper story for my son because it mentioned the football player has diabetes ~ but as we talked about the story my son quietly caught up on the rest of the sports section. He seems to think that any way another person with DS 'represents' the community is just fine, just like actors are not as picky about roles as their families might be because they appreciate the opportunity for work. My son would rather make speeches or write about other issues than Down syndrome, especially this near election time, his birthday and the holidays. As for Special Olympics - he has made many close friends there he would otherwise have missed, growing up included in mainstream classrooms - he has learned to be helped by and be helpful to people with diverse diagnoses and challenges; they have 'trained' so many coaches and helpers who get as much as they give during practices and competitions. Sports and the arts are activities that help all of us discover potential that we are unlikely to learn elsewhere. So much depends on the people who show up at these activities - coaches and athletes are respectful of one another and serious about what they are doing. Until there are other options where people with disabilities can get together with peers once or twice a week for physical activity, skill building, and camaraderie - not to mention the delicious banquets - er, award ceremonies - I will take any criticism of S.O. with a grain of salt. As for self-esteem, I would recommend reconnecting with Abe Maslow's hierarchy of needs. Anytime mainstream kids or coaches can practice including those who otherwise would be sidelined and model that behavior for others moves us forward. In the case of this football player, the other option would have been indifference, and that has gotten us nowhere. It is fairly patronizing of us to judge whether the relationship the football player in the viral video has with his team mates and the community is genuine. That's just a risk we take in having opinions and expressing them. So many teens, with disabilities or not, walk through life with no acknowledgement until they do something wrong, it's too bad we are so critical when they do something that is not actually wrong.
Each time I tried to leave the comment webpage, my comment was resaved - and when my son heard me say "Oh, for heaven's sake!" he came in and had a chuckle about it. When I showed him it happened three times, he walked out of the room shaking his head and laughing. Patronizing? Or just a wicked sense of humor?
ReplyDeleteThanks folks for a terrific discussion. I enjoyed reading each and every post and considering all the points of view. This kind of respectful dialogue is what we need more of on the web. Thanks for being firm in opinion but gentle in manner.
ReplyDeleteThank you, Dave, for giving us the opportunity to open our perspectives a little and consider another side.
ReplyDeleteWhat a rich and interesting discussion! The commenters here really add something to Dave's already great blog.
ReplyDeleteagain you have brought tears to my eyes...With that said I ws also not so found of the touchdown video it did not bring tears to my eyes. I thought " charity case" and my daughter is not a charity case and I'm sure this young man is not either. I'm willing to bet, because I'm sure this young man like many Down syndrome adults, and children , he is extremely smart, and most likely went home and said " they let me win". Now I also try to see positive in people even when they r at their worst, so I look to the positive that instead of laughing at, or bullying this young man, these " typical" teens did what they thought was good for this certain football player, and yes it is a baby step , but a step and the fact that people are thinking, even if they are so off, they r still thinking, and that is hope for the future.
ReplyDeleteI must be a cynic too. I've gotten the football video in my inbox at least seven times, and I didn't like it either. I do love the clerk with Ds being so wise, "I was just giving you practice for the day when you won't need help for winning races." No doubt she's scored some amazing touchdowns herself!
ReplyDeleteThank you for posting this. I have been trying to put this into words for my husband who LOVES to let others win. It gives him a big rush but it really makes me mad and I never know if I really won that game of cards or what. We have a daughter who has DS and we are Special Olympics volunteers. This is very important to know!
ReplyDeleteI think I'm a cynic too. I've seen the football video all over the place and have no desire to watch it. I don't want my daughter handed something because others feel sorry for her, and that is what this feels like to me. I'm also not a fan of kids with disabilities being voted homecoming royalty. It feels like they are being put on display and laughed at. I know this isn't the case everywhere, but that's always what I worry about.
ReplyDeletewow, u may be the biggest a-hole i have ever heard, i just don't know how a story like that doesn't make u feel bad and sad for a kid like that or how it doesn't make you feel happy for the kid who has lived his whole life labelled buy pieces of turd like you, and when he finally gets to have the time of his life and to be happy, you think it's wrong. This kid will never have the same opportunities that you will so why do you want it to rain on his parade? Who cares if he gets some fake self confidence, he feels good about himself and that's all that matters. You honestly were born with a mental disability too if you can not feel for kids like this, you are an emotionless bastard, I truly hope you have a son with down syndrome so you can appreciate what parents do for their children with any kind of disability and how tough it is for the child, my brother has down syndrome and I would do anything to let him score a touchdown or even let him walk on the field. You make me sick and I hope God $h!+$ on you, f#*$ you
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