Disability, the State of the Union, and Partisanship
Posted: January 30, 2014 Filed under: advocacy, disability, Down syndrome | Tags: disability, Down syndrome, partisanship, Politics, SOTU, State of the Union 33 CommentsAfter reading President Obama’s State of the Union address and congresswoman McMorris Rodgers’s Republican response, I’m sure of one thing—the way both used disability for their respective platforms highlighted the problematic way disabilities of all kinds get used in public narrative. Frankly, both speeches felt like the same old nonsense—ideological battle fought out in code words and innuendo with very little substance.
Both used disability as inspiration to further their respective ideologies in ways that made me deeply uncomfortable.
President Obama takes the story of Army Ranger Cory Rembsurg, a now disabled vet, and weaves it into an allegory of the American Dream. Now, I have no qualms about Remsburg and his family being incredibly proud of his service and his personal resolve in approaching rehabilitation. What makes me so uncomfortable is how his story gets presented and then used as a literary device. Regaining abilities after a disabling accident becomes synonymous with the American work ethic.
“Even now, Cory is still blind in one eye. He still struggles on his left side. But slowly, steadily, with the support of caregivers like his dad Craig, and the community around him, Cory has grown stronger. Day by day, he’s learned to speak again and stand again and walk again, and he’s working toward the day when he can serve his country again.”
This translates to me as something to the tune of “He’s not normal yet, but he’s overcome so much of his disability that he is well on his way to being a contributing member of society again.” What happens if he doesn’t see, walk, or talk like he used to, even after all that rehab? What is the implication for someone born with a disability, who might simply never walk, talk, or think in a “typical” fashion? If a disabled vet doesn’t go back to work again, does he fail to count as an inspiring success story?
“My fellow Americans — my fellow Americans, men and women like Cory remind us that America has never come easy. Our freedom, our democracy, has never been easy. Sometimes we stumble; we make mistakes; we get frustrated or discouraged.”
So now disability has become a metaphor for all that holds us back from freedom and democracy. We stumble and make mistakes on our way to freedom and democracy, yes, I wholeheartedly agree. However, is the President implying that disability itself is a stumble, a mistake? I surely hope not. I imagine that many would be surprised to learn that for many people with disabilities, the road back to normalcy is not the holy grail, in part because it is not an option and in part because normalcy in and of itself is a fallacy used to marginalize minority groups.
Furthermore, the President avails himself to Remsburg’s story despite that veterans groups have criticized him for failing to make do on earlier promises to help veterans after a catastrophic cuts to benefits.
McMorris Rodgers is no better. When I first read the snippet in which she spoke of her son and his Down syndrome diagnosis, I was pleased. While I didn’t entirely appreciate her need to point out that her son was reading above grade level as evidence of his worth, most of her words were beautiful and did resonate with me. Then, I read the rest of her speech. After that flowery bit about her son, the rest of her speech simply had nothing to do with anything relating to disability or Down syndrome.
While I know that many were very happy that someone mentioned Down syndrome in public without a derogatory slant (I admit I was initially happy as well), I am now both disappointed in McMorris Rodgers’s ableism as well as her failure to mention a single policy item that would improve the lives of people with Down syndrome. Call me greedy, but it simply wasn’t enough for me. I wonder if any readers think I’m being unreasonable because topics related to Down syndrome or intellectual disability are such minor issues to bring up on such a national stage. Well, my response is, she brought it up first. If she wants to use her story of raising her son with Down syndrome to create a message of equality, then let’s hear some actual suggestions of how equality and civil rights for people with Down syndrome, intellectual disabilities, or any disability could be furthered.
What’s more, I see McMorris Rodgers’s pairing her son’s Down syndrome with partisan politics to be quite dangerous. She emphasizes how she pulled herself up by the bootstraps to be what she is today, is she implying that simple hard work will do the same for her son? I couldn’t help but wonder whether she availed herself to Early Intervention services, which are paid by the government. Is that an instance of an individual with a disability being empowered by a smaller government? What about the fact that her son (and mine) might grow up with opportunities to work only for pennies on the dollar in sheltered workshops? No amount of hard work pays off when you earn 20 cents an hour for work that a non-disabled person gets so-called minimum wage to perform. McMorris holds up the almighty economic growth card as the answer to America’s problems, but I can’t remove from my mind CEO Peter Schiff’s recent offensive remarks that the “mentally retarded” are worth less in wages than others. McMorris Rodgers’s Republican comrades are the ones who have blocked ratification of the Convention on the Rights of Person’s with Disabilities, despite that the UN treaty was modeled based on our own Americans with Disabilities Act.
So I have to ask again, why couldn’t McMorris Rodgers do more by mentioning her son’s 47 chromosomes than simply toe her party line?
In the end, I doubt either President Obama or Representative McMorris Rodgers (or their speech writers) intended to imply any of what I just posed. And that is precisely my issue. Disability gets used in the public narrative as convenient metaphor and allegory; a vehicle with which others get from one rhetorical place to another. Even a mother’s proud and genuine story about her son gets lent out to a political agenda. No one seems to think about the hazards and pitfalls of using people with disabilities in this way. Real, infinitely complicated, unique people get flattened into a stencil that gets colored in whatever way suits the user.
I’m not a wheelchair user and don’t have a brain injury, but I do know that being led to feel inspired about a man who was overcoming his disabilities was deeply uncomfortable for me. I want Remsburg to make whatever choices will lead him happiness and fulfillment, but I don’t want to worship at an altar of normalcy. Some people don’t regain abilities after disabling accidents and we should be accepting of them just as much.
I do have a child with Down syndrome, and I will never use whether he reads below, at, or above grade level as justification of his worth or potential, nor will I use his story to tug at anyone’s heart strings to further any of my political beliefs.
Kimchi Latkes 
Jisen, once again beautiful. I completely agree. The political agenda are so often link to the societial views of normalcy; what one has to be, do, or look like to be respected and accepted. Let’s keep the fight alive. Thank you, from one momma to another!
Thank you! xo
“Real, infinitely complicated, unique people get flattened into a stencil that gets colored in whatever way suits the user.”
This is, sadly, so true. In my life with my now-26 year old son, I’ve encountered it across all the spectrums of school, community, work, play, service providers and agencies. There seems to be this preconcieved notion of “acceptably and appropriately disabled” and it means “someone who fits into my frame.”
I have a kid who does not fit into that frame. We have not sought that, but instead have reached for a silly thing called “real life.” On his own terms. Without judgment or obstacles. Yes, we need help in reaching Max’s idea of a happy, meaningful life. So often, this is at odds with what people want from him. If I never see another goal or objective in his life, I’m fine with that. Just as I wanted for all my children, I want him to find a way to be happy. And he, like all humans, chooses that for himself. My dreams do not include working towards pointless goals and forcing him into undesired situations and activities when what he wants is friends, family, and a real life. Music and social opportunities and a chance to give what he has to the world. Oddly, this is quite difficult for most people – but not all. I cherish the providers and support in the community that can see Max for who he is, and not for who they want him to be. He doesn’t want to be funneled into disability activities and programs. We work towards a safe, happy, real-world life for him. It doesn’t fit well into “plans of care” that are fundable. But it is worth everything to us.
“It doesn’t fit well into ‘plans of care’ that are fundable. But it is worth everything to us.”
Yes, I find so often that things boil down to what is fundable and what is not, it is very frustrating to me! And yes, acceptably and appropriately disabled, absolutely. Woe to you if you fall outside of that.
LP is only a year old and I’m already sick of the goals!
Submit to HuffPo. Now. I mean right NOW.
Thanks again, mama. :)
Spot on Jisun. “Disability gets used in the public narrative as convenient metaphor and allegory; a vehicle with which others get from one rhetorical place to another.” And it never seems to actually take those with disabilities anywhere new and improved.
Yup. Nothing gets funded, services get cut, but at least people are inspired. ;)
I agree with above commenter…….this is one meant for HuffPo FOR SURE. I was not happy with either speech and felt both of them leaned on disability like a crutch. In fact, I wasn’t really pleased with McMorris-Rodgers at all and took that reading comment negatively. So her kid can read above level right now. What happens when he can’t? Does she kick him out of the house because of it? What did it have to do with politics? Neither of them addressed the fact that people with disabilities aren’t given fair living wages like “typical” people and neither of them will either.
The minimum wage thing really irks me. So many people don’t know that there is not a minimum at all, but that there is an entire underclass of employees with very few protections. Anyways. Thanks for the comment, mama. :)
I want to start by saying that I agree with a lot of what you wrote and I am particularly appreciative of anyone who puts it out there and gets people thinking and talking. that said, i find it really interesting that you were put off by President Obama’s comments. While obviously meant to stir up some emotion in the crowd, I didn’t get the sense that he was even suggesting that Army Ranger Cory Remsberg was less than anything right after his accident, or as he is now. I think Obama was talking about his character. Character is about who we are, not what we can or can’t do. Hard work and determination are about who you are and there is nothing wrong with working hard at something you want to achieve whether you have a “disability” or not. My son works hard at lots of things everyday and it has nothing to do with thinking he isn’t good enough just as he is. I don’t like it when politicians manipulate us, and clearly we were being manipulated, but I think it’s a serious stretch to suggest that Obama was calling a wounded war veteran a mistake or a fumble. He was talking about America, in my opinion anyway. i don’t understand why you think praising Remsberg for working toward what I can only assume are Remsberg’s choices of goals is praising normalcy. I certainly didn’t see it that way. Obama was praising Army Ranger Remsberg.
How do you extrapolate from what Obama did say that what he meant underneath was that disability holds us back from freedom and democracy? Might he possibly have been saying that a soldier who fought for democracy and sustained serious injuries is a reminder of how hard we have had to fight for freedom and democracy? It’s not earth shattering, it’s not new information, but it’s also not about devaluing people with a disability. I’m not saying that this doesn’t happen all over the place, I’m saying it didn’t happen here.
McMorris Rodgers, on the other hand, was pathetic. I wasn’t even remotely excited when I heard her say she has a child with Ds. In fact just the opposite because I KNEW she was about to use him. Nothing disgusts and upsets me more than this. Using your child to further your professional agenda is about as bad as it gets. What she did was ask everyone to listen to her and believe her because she has a child with Ds. That’s fine when the topic is about Ds or something related. Fine, because maybe then you’re the expert. But her comments had nothing to do with Ds and everything to do with manipulation. She did a huge disservice to people with Ds, in my opinion. And oddly, in contrast to your response, the only thing I didn’t mind that she said was that her son was a really successful reader (i’m paraphrasing and giving her the benefit of the doubt-I have no idea why because I’m not a fan of “above grade level” language for obvious reasons). Some people don’t know that there are people with Ds who can read, so to let them know that her son is an excellent reader is good information for the uninformed general population. I didn’t really think this speech was the time or place for sharing that information, but I don’t think it meant what you took away. She didn’t say he would have less value if he didn’t read. If she had said that I’d be right there with you.
As parents of children with special needs I think we need to be very careful not to become people who walk around looking to be offended. I sometimes catch myself doing this. There are plenty of very valid offenses out there, but if every single thing becomes offensive eventually people stop listening. You make some very good observations, but in my opinion you also introduce a lot of imagination into what Obama in particular was saying. I would wholeheartedly support the suggestions that you submit this article to bigger arenas, but I would do a little editing so that the really great points you do make don’t get dismissed because of the ones that are more of a reach, In my opinion of course. I am a HUGE supporter of the spread the word to end the word campaign and I’ve recently noticed that word is popping up all over the place again. It makes me sick but it also makes me wonder if after a while people just stop hearing. As a community we really can’t afford to have that happen so we need to be impeccable in order to make a difference.
Lauren, I just lost a long reply so sorry if I don’t respond to everything. Obama… I think you missed where I said that I had no quarrel with Remsburg’s personal fortitude. He should be proud for doing what he’s done. I think you also missed where I said I doubted that Obama meant any of the implications and questions I posed. But that isn’t the point for me, because if that were true everyone who says, “Oh, I don’t mean retarded THAT way,” gets a free pass. It is about the bird’s eye view of what happens when you put this guy’s personal story about disability up against larger, impersonal ideological rhetoric. It gets slippery. I’d also point out that stories of disability are often skewed towards the “overcoming” slant. Why? Because they are not shared and told for the sake of the actual person who is disabled, they are told for what the able-bodied reader can glean.
McMorris Rodgers and grade level reading. I said specifically that on one level she was simply a proud mother. If you go back to her speech, however, you’ll see that his reading ability is offered up as a reason why he is not limited, or less worthy. I don’t want to play that game, however. For me, it isn’t about “Oh, look, they CAN actually read,” but more that dignity and equality have nothing to do with ability, period. (Plus, I don’t even really like the entire concept of “above” and “below” grade level…) Again, it isn’t about her personal story. It is about what happens when you take that story, selectively strip out pieces of it, and put it next to an unrelated agenda.
I strongly disagree with you on the idea that parents of kids with special needs need to temper their outrage in order to make others listen. There’s a lot to be offended about, frankly. That’s a kind of emotional blackmail to me. I can’t spend energy coddling the feelings of people who have hurt me. Also the idea that we must be impeccable to be heard, I also disagree. People are flawed. Everyone still gets to speak their outrages and advocate for what they care about, in my mind.
As for the r-word, I believe it crops up because the attitude isn’t confronted, even within advocate communities. When we continue to use the words stupid, moron, idiot, or imbecile in the exact same method as the r-word, then it seems inevitable that the word should creep up again. I wrote something on my Facebook page about a meme going around about a floodlight and a joke about Down syndrome. It never used the word, but it didn’t need to. As long as this kind of thinking, dehumanizing, and minimizing goes on, I think you and I have a long battle to fight.
BTW, wanted to add that I appreciated the way you started your comment. I know that I responded to all the points where we might disagree, but that doesn’t mean I don’t see common ground.
I hope you don’t mean that you and I have a long battle to fight with each other! :)
i just lost a huge chunk of my reply as well, but I’ll try to recreate what I can. Before I get into any of it I have to say that I did not say that parents need to “temper their outrage in order to make others listen.” It makes me very uncomfortable to have you or anyone put words into my mouth-words that did not come from me. What I did say is that I don’t think it serves anyone or even your goals on behalf of people with special needs to create something when nothing is there. No one said you should worry about the feelings of people who have hurt you if you don’t want to, but if you’re not careful you might end up feeling by hurt by everything anyone says and it will be much harder to make any progress at all. Especially if there’s no there there, as they say. My point, in fact, was almost the opposite. Fight hard for what you believe in. Fight hard against what matters. Just make sure you aren’t imagining a fight that isn’t actually there. And you can sling outrage around about as many issues as you want, but if you really care about making progress you will find that yelling and screaming about every little thing will get you nowhere. obviously I don’t know you at all so I am only making this comment in reference to this one blog post of yours. I’ve already said I don’t think some of what you said was actually there, but I suppose I’m about to repeat myself a bit. After this I’m prepared to move on and agree to disagree about some things and agree about others.
I think perhaps some of what I was saying may have been misunderstood and I take responsibilty for that. I agree with many of the points you were making in general, I just didn’t agree that what Obama did devalued people with disabilities. Honestly the story wasn’t even about disability. but I guess anything can be if you choose to make it so. you can take almost any story, throw it up against a wall of big picture, “impersonal, ideological rhetoric” and make it fit your agenda. my point was not that he said it but he didn’t mean it. My point was that he didn’t say it. I felt you made it mean something that wasn’t there. This is a far cry from someone using the r-word and then saying, o, i didn’t mean anything by it. or even worse, “no offense.” In that case they said it. in this case I don’t believe he did. And since you went on further down in your post to say you didn’t really think this either, I was simply saying that I thought it weakened your salient points to speculate in this way about something that even you don’t believe. That’s the fight that to me isn’t worth fighting-the one that you yourself admitted wasn’t really there.
And maybe I did miss some of the republican response (I had a very hard time listening to her as soon as I was on to her, plus the delivery was hard to stick with),but i just re read it and I still don’t think she even implied that her son’s value was based on his ability to read. is there anything positive she could have said about her son that wouldn’t have made you feel that she was pressing some kind of value system for people with special needs? Believe me I’m the first one to knock the republicans for anything, but I think she was talking about opportunities to reach our own individual potential, no matter what that potential is. Yes, as I said, she sort of killed it by using grade level, but unfortunately that’s a measure that people understand. And as you yourself pointed out she really wasn’t talking about “disability” at all. She was jerking everyone’s chain to get their sympathy, something I despise, under some misguided delusion that that would make them listen and possibly believe her. again, I did not say that people don’t often place the value of people with special needs below the value of others, i just said it didn’t happen here, big picture, birds eye view, or not. The saddest thing to me, and I think we agree on this, is that she didn’t use this opportunity to do something positive for people with special needs-to offer some new plan or new insight. To me that says more than anything about the general opinion of the value of people with special needs, when even a parent, who has the ears and eyes of the entire nation and beyond, doesn’t say a damn thing of substance about it. And the reason she didn’t is likely because she knows most people don’t really care unless they have a personal connection. that’s what we need to change.
And as for the R word, the s word, all the i words, the m words or any words that insult and degrade people, I have no tolerance. I will never give up this fight. I was not offering to back down, I was making an observation about human nature. In my mind it helps to take a look at what is and isn’t working to make sure you are always serving your purpose, always getting closer to your goal. The obvious goal is to change attitudes about people who are different. But I’m not sure I agree that advocacy groups are not trying to change attitudes. the ones I respect are making a pretty valiant effort.
i think we are more in agreement than not. The main difference is that i didn’t see a lot of issues that I know exist elsewhere in the speeches and apparently you did. I’ve been at this parenting and advocating thing a long time and you are still fairly new to it and I am completely certain that each of us brings a valuable perspective to the table based on these differences. As I said, I’m always on the lookout for trouble, and sort of like pornography, I can’t always describe it but know it when I see it. In this case I truly just don’t see it. But I also believe that we both want what is best for our kids and for an entire community. Have a great night!
I’m not sure if you want another response, because you seem to be saying that the some of issues I saw with the two speeches simply weren’t there. Well I disagree with you, obviously, since I wrote the post in the first place. ;) When you say you know it when you see it, well, that is your compass. I feel very much the same way, and I see it there.
I will say that there is a difference in my mind between devaluing, and selectively upholding. It is kind of like when one kid in a family gets a ton of praise. The one who is working so hard at rehab and says all he wants to do is get out of his wheelchair, or the one who talks about overcoming her Down syndrome, for instance. (These are just imaginary composites, mind you.) If one type of kid gets the majority of the praise, then you have to wonder about the values going on in that family. I’m saying that (I believe) our human family is ableist, and it shows in these subtle ways. It doesn’t mean there is anything at all wrong with those kids and their personal choices, but more to do with the system/family as a whole.
I don’t think that our advocacy groups aren’t trying to make change. I just often wonder if it is the most effective or lasting change, that’s all. That doesn’t mean I think I know everything though, but I do wonder.
Anyways. We certainly do want what is best, and maybe what is best is diversity of opinion and civil dialogue. It is more than I can say for many other forums, disability community or not. :)
Cogent and eloquent as usual, Jisun. Interesting stuff for me to read as a Canadian because our policies are often informed by those of the United States.
See, and I often am so jealous of you Canadians, with your healthcare and what seem to be such reasonable policies. Maybe the grass is greener?
Amen, Jisun. And I agree – submit this to HuffPo. This needs to be seen by a larger audience. There’s too much feel-good crap out there about disability.
Thanks, you. :)
Excellent post! And great discussion in the comments too. I agree with everyone above. Submit this!
Thank you, Jenny! xo
Ahhhh politics. So much fun.
OK – Now *I* just lost a rant of a set of comments.
Oh Well – I guess it was meant to discuss later.
Short version – Sheltered Workshops are not all created equal and I fear fear fear this whitchhunt upon them. Do you actually know anyone involved with a sheltered workshop? I’m not asking to accuse – I’m asking because I want to know. I am researching this now for my own forums. There is so much more done and to be said and…Argh.
Keep talking.
Is Marcus working in one? I’d love to know your experience of them. I do know a couple young adults in sheltered workshops, and I do think that their experiences are not universally bad. However, for me, this topic feels a lot like the inclusion argument. I don’t think that any parent is *wrong* for putting their child in a segregated classroom, because I think that this current education system is not welcoming to all children. So parents are often faced with the choice of staying in GenEd out of principle, or doing what is more immediately right for their child. But I do think that full inclusion is right, is what should happen, and that radical change should happen in order for it to be reality.
So with sheltered workshops, I feel that, yes, individual situations can work out, but it is no good to uphold an oppressive system. And I do think that it is an oppressive system to single out people with disabilities and make a legal exemption to pay them less for equal work. I can’t get behind that no matter how I’ve tried to roll it around in my head.
I hope you subscribed to these comments because I’d love to hear your further thoughts!
Exactly. There must be options.
The way that sheltered workshops are being lumped together as one evil option, and quickly, is not true.
My son is not in a sheltered workshop. However, I know people who do.
I cannot stress enough that there are families that need a workshop to enable their family member to *be productive in the best way they can be* and without a workshop there would be…nothing.
My Big fear is this: We are *not* a country who historically goes from witch-hunt to fix. We are a country that goes from witch-hunt to burn. It reminds me of the mayor of San Fransisco several years ago wanted to fix the problem of homeless people sleeping on bus benches. Instead of helping the problem – people living in homelessness – he made the benches all swivel. So no one could lay down on them. Ummmm, not the issue. A ban on sheltered workshops is not going to make other businesses *take in* people with disabilities. Increasing the pay to clients in sheltered workshops will likely lead to less employees to help and care for those clients, leaving them in a less safe and cared for environment. Or lead to no work at all from the businesses that sub-contract.
And I started the rant on pay – but I’ll wait on that notion.
Sorry – you’re my first sounding board. It helps me to know I need to do more homework. I’ll let you know when I articulate this into an appropriate forum. :)
Smooches,
Mardra
But wait. I don’t necessarily agree with you labeling it a witch hunt, because that sounds like there’s no validity to opposing sheltered workshops. And while I don’t think that there’s any need to decry any *individual* who is in one now, I don’t actually support sheltered workshops as an option. I just can’t support a system that allows, encourages even, people with disabilities to be used as cheap labor. How can we advocate for equality and then support a system that actually creates oppression?
I totally agree that banning them isn’t the only thing that needs to happen, but as long as they are legal, I don’t think there is good motivation for change. The cost benefit is too powerful, and maybe I’m cynical, but money rules.
I can’t help think about racial segregation in the schools. Those kids did not get a better, safer, happier education. At least not in the beginning. They had to march into that white school with guards, but they did it, and it was right. Am I telling anyone that they need to do that to their family member? No. But I do think that this kind of boldness needs to happen for us to get to the other side. Fear of losing crumbs and therefore upholding an oppressive system, I can’t see how that is good.
Having said that, I do think about alternatives to sheltered workshops. Flat out volunteering, for one. I think there’s too much emphasis placed on money, even to the point that we are willing to allow someone to be paid 20 cents an hour so they can call it a “job”. Well, many call being a SAHM a job. IDSC is entirely volunteer run, but I’d be surprised if the directors there didn’t consider their positions as “jobs”.
But also, I’ve heard of job shadowing programs, programs that will match young people to paid and unpaid jobs for the experience, then will support the individual through the transition into a paid position. These programs go out and recruit disability friendly employers. None of these involve sheltered workshops. Look at Steamer’s Coffee shop in CO, that’s not a sheltered workshops as far as I know. Those are real, sustainable jobs.
And again, I come back to the special ed parallel. There are some really radical, amazing, exciting things going on in education that happen by their nature to be inclusive of children with disabilities. I’d rather throw my support behind that rather than support the idea of segregated classrooms as a necessary option. It is currently a necessary option for some only because the regular GenEd classroom is inhospitable to kids with special needs.
Like I said, I don’t go pointing fingers at individuals for making the best choices they can. But the basic theory of sheltered workshops, I don’t support.
Anyways. Before I write another blog post in the comments here…. Oops. Already did. Oy.
I know, right?!
I think what we agree on is there is more to the story.
To be honest, my view so far is based on my business knowledge and my personal experience with workshops and families in my area. Plus they few articles that have circulated that oppose what I have seen/heard/know here. SO – When I have compiled more research and experiences from others – I will let you know and we can pick this up again. :)
It’ll be fun! (ugh)
Yes we definitely are in agreement there. To be continued… ;)
Great post, Jisun! I am always wary of getting into political arguments. More fun to read them! You highlighted a major reason why: I usually can’t wholeheartedly defend either side….
Yes, I generally avoid political arguments as well, because I’m starting to think that I’m really a libertarian survivalist who wants nothing to do with it at all. ;)
I wanted to let you know I nominated you for the dragon’s loyalty award! You can check out the entry here:
http://thisismeforallitsworthjournal.wordpress.com/2014/02/04/the-dragons-loyalty-award/
Thank you! I’m honored and humbled. And excited to read some new blogs! :)
Hi Jisun,
Yours is one of two blogs I follow regularly. The other one is about motorcycle adventure travel which is an activity I love to do.
I read yours because I like the way you think and the way you express your thoughts and feelings in writing. And I like your topics. I’m a Canadian, and did not pay much attention to the Union speech from Obama until you pointed out how aspects of it, and the Republican speech, got you thinking about disability. So I read the Union speech and initially didn’t see the connection you made or what about the speech made you feel as you do.
I went back to my thinking cave for a few days and realized I was still struggling to understand why I did not see it as you do. And then I DID see it as you do, but I had to go way back to when I parented my first child. I was 20 and alone. Her “special needs” were extraordinary and I won’t go in to the story here other than to tell you she lived until she was 21, and passed away in 1990. It has been a long time, but it also hasn’t. And now, reading your thoughts and hearing your questions, I remember my own, so long ago. They were the same as yours. I didn’t want to focus on ability or the dis part of it, but on what could be. And I wanted everyone to shut up with their labels and pigeon holes, and standards and tests and guesses. I just wanted to see that smile she had and thrilled at all her milestones. Her own personal, not measured against anyone else, milestones. I was also noisy and fought “the system” Still do because I trained to be an early childhood educator and then specialized in working with kids with special needs, and in family support for 34 years.
It was only last year that I obtained a diagnosis. A name for what she “had”. In the absence of a “what” while she was with me, I created many “whys” and ultimately blamed myself. It was just easier. When I found out last year about 22q11.2 chromosome deletion http://en.wikipedia.org/wiki/DiGeorge_syndrome, I wept. For me, because it was after all, not my fault, I had not been the cause of her difference from other kids. And reading your thoughts I realized I accepted her being because she just always was who she was: a sweet baby, a nice person with lots of friends, a girl with a big heart, a cute smile, a wonky sense of humour and a crush on Corey Hart.
Love to your Mouse, Chipmunk and Little Pirate.
Rosemary, thank you for sharing this. I found my heart aching for you, that you experienced such loss, and at the same time joy for your daughter to have been able to grow and flourish into the beautiful person you describe.
Reading your description of not knowing what she “had”, I wonder how things will change, as we diagnose and study more and more genetic differences and conditions. Not so long ago in recent history, no one knew what Down syndrome was, after all. I wonder how many mothers experienced what you did when they learned what Down syndrome actually was.
Thank you again. Love to you and yours!