Monday, February 25, 2013

Disability Snobs

It all started when friend of mine left a comment on a blog post about how she sees different disabilities, uh... differently and cannot lump them all together when thinking about big questions like "Are People With Disabilities Contributing Members of Society?" She referred to herself as a disabilities snob.

Then another friend asked what that was. Then someone else posted the question on their Facebook wall. Then a bunch of people chimed in, and eventually the whole thing left me wondering what it really means to be a disabilities snob.

ukgirl2Ok, so snob connotes superiority and a condescending attitude toward someone believed to be of a lesser position. But I don’t think that is how Kim meant it. I think she was saying it like I might say "Masha is a shoe whore." No need to get all stuck on the word whore, know what I mean?

If I were a disabilities snob, would I think my kids are better than kids with other disabilities... or even better than some other kids with Ds? Would I insist on all inclusion, all the time? Would I cringe when I see my girls dancing in a room full of people just like them... only grown up? Would I do my best to raise them to not want to be part of the "special clubs"? Would I feel insulted if a local church invited my girls to come to a special activity night for people with disabilities?

If yes, then I am definitely not a disabilities snob because none of that is where I am at these days.

I can see how Masha and Autumn could grow up to be super friends to other people with disabilities like their own or even more profound... The two of them go beyond tolerating their sister... they include her. I think M&A can move in both circles... perhaps sometimes learning or playing in a fully inclusive environment and other times doing the same in a group designed just for people with disabilities. I want Masha and Autumn to spend time in both worlds because I believe that is how they will bridge the gap to make it one world.

Right now Masha is in Gen Ed Kindy which is a lot of work and stress for me, and so far I am not sure it is the best way for her to learn but she sure is coming along. I wish though that I could find some extracurricular activities, like a dance class, that was only for children with special needs. Why? Why not fully include her all the time? Because sometimes it would be nice to just have her be exactly who she is without the pressure that comes with standing next to The Ableist.

The same goes for Autumn... she is in a reverse-inclusion preschool, which means there are more typical kids in her class than children with identified special needs. But it would be awesome for her to have someplace to dance, or play, or just be herself with a bunch of other kids who aren’t seen as The Species Typical.

That is why in some ways, our house is the best place of all. We have five young children, boys and girls, typical children and those with differing needs whose levels range from mild to profound depending on the activity. Sometimes they all get on the table and dance together, or they all scream it up tearing apart the living room, other times they break off in natural groups... that change players depending on what is going on... Masha and Autumn sometimes keep up with their brothers playing ball or wrestling, other times they are perfectly happy to chill out with Kimani (ok, so no one ever really chills out with Kimani because chill is just so not her, but you know, they play with her). It is a place where they can all just be themselves, where they get to decide when to be "fully included" and when to be "self-contained".

The bottom line is that I think most adults with Down syndrome are on the cusp... There are times they are interested in and want to be a part of typical age appropriate activities, and there are times when they would be perfectly happy to spend a Friday night at home watching a Disney movie rather than hanging out at the local club drinking Margaritas. To try to push or pull them one way or the other, that to me is what it means to be a disability snob.

There are a lot of people talking about these issues, a lot of talk.... lots and lots of talk. But not so many voices from the ones who are walking the crawl. I want to hear from those parents. What do they think it means for their child to contribute to society? What do they think it means to be a disability snob? What do they think of ableism?

Thursday, February 21, 2013

Not Jealous of You

This morning, while all five children—home from school on winter break—frolicked around and I tried to clear off a spot on the far side of my kitchen counter where I might fold laundry, Kimani jumped from the kitchen table to the counter and, in a split second, threw my bread machine onto the floor... smashing it.

I was so mad. I chastised her and promptly plopped her in her crib for a time out. And then I proceeded to attempt self-pity and tried to think of someone I could be jealous of... someone whose child does not daily earn the title of "The Master of Disaster."

No more fresh bread, damn it.

And the very first thing that popped into my mind was Kevin Carter’s Pulitzer prize-winning photo...


No, I cannot be jealous of that child’s mother.

But that didn’t stop me from wanting to feel like shit so I put the starving children of this world out of my mind and tried again. And images from Kimani’s school came crashing down on me... beautiful little girls just like her who cannot climb on tables and counters, who cannot walk into their mother’s arms...


"Ok," I said to myself, "it was just a bread machine" (this time). Despite the first tingles of guilt, I still whined to myself, "but couldn’t it be easier?"

Surely she could be like... surely I could be jealous of... think think think

I can’t show you pictures of what I saw then... a procession of little faces, Kimani's friends—some forever infants, some toddlers, some four year olds like her—all of whom break bread in Heaven now... each one I remember so clearly, and their mamas... each one so undeserving of the loss they suffered.

What the hell is a broken bread machine compared to that?

Tuesday, February 19, 2013

Her Contribution

I assumed that when Ellen posted, “Are People With Disabilities Contributing Members of Society?” she was referring to people like my Kimani, people whose disabilities will preclude them from gainful employment, and most any achievement or accomplishment that will somehow add value to our society... people who will likely need to be cared for physically and financially their whole lives.

butterflyFirst I ask you, what does it really mean to be a contributing member of society? How is a concept like that measured? By giving as much or more than you take out of some collective pie? Deciding who is a contributing member of society is a slippery slope if there ever was one but Ellen bravely concludes that people like Kimani do contribute to society,
People with disabilities are contributing members of society. They show us what really matters in life, what it means to be human, what it means to be loved and accepted simply for being, not because of what we can or cannot do.
I know where she was going with that. It is the same place I was trying to go when I wrote “Seeing in the Raw” for the a year or so ago. Kimani is human, raw human and she is loved simply because she exists. She is lovable exactly as she is. But that has more to do with inherent value than it does actual contribution to something.

Aren’t they impossible to unravel... direct and indirect contributions to society? Very few people who make direct, valuable, measurable, lasting contributions to our society would claim there is no one who motivated them or affected their desire to do what it is they did.


And I think that is what Ellen meant, that people like Kimani contribute to society indirectly by influencing the people around them to be more compassionate, thankful, tolerant, and perhaps even drive them to adopt, research cures, donate time and money, and to develop policies and enact laws. Is the butterfly who flapped its wings any less of a contributor than the tsunami it caused?

No, Kimani does not change everyone who meets her. In fact, she will likely only have true impact on a very small circle of people. But who can measure what the currents from her little wings will bring forth? Who even has the right to try?

Wednesday, February 6, 2013

Ableism, Are We Guilty?

First off, for those who may not be familiar with the term ableism, it is a form of discrimination,
"A network of beliefs, processes and practices that produces a particular kind of self and body (the corporeal standard) that is projected as the perfect, species-typical, and therefore essential and fully human. Disability is then cast as a diminished state of being human." - Cambell

By the way, I love that term, species-typical because after all, nobody is normal.

pt2 Where is the line between providing and supporting a child with Down syndrome (or any disability) with opportunities to develop in a healthy way and driving that child toward the species-typical model via therapies, drugs, surgery, and parental pressure? Sometimes I think the line is imaginary and crossing it is simply a matter of semantics and interpretation. Other times I know for sure it is real and I am sad to see it crossed.

At the edges of our communities, we are two camps divided... those that believe most any sort of intervention in the natural development of a child is an attempt to fix perceived deficiencies and those that live to brag about their child’s latest success on the continuum of normal. Is there an agreeable in between? And if our children could see their own futures on both trajectories, and could articulate their desires and fears... what would they tell us about the importance of achievement?

pt3 I have not taken any disabilities studies classes and thus my non-scholarly opinions on this topic are developed from experience with my girls, reading and thinking through the experiences of other parents in the Ds community, and exposure to a more-than-average amount of therapists and therapeutic opportunities... which is my polite way of saying I am just thinking out loud here.

When Kimani was born I, like most parents of a child with Down syndrome, was sure she was going to be THE Down syndrome rockstar... she was a beautiful infant and extra chromosome or not, she had smart bloodlines... How great she could have been we will never know because at 4 weeks old she contracted bacterial meningitis, and although I did not know it at the time, her gonna-be-a-rockstar days were over.

When we got home from the hospital (Kimani was 4 months old) Early Intervention began and I learned a whole lot about milestones, expectations, and therapy. By nature, I am a "why?" person so everything that was introduced to my daughter as part of her therapy, I questioned. The things that made sense to me, I allowed... the things that didn’t, I declined. What I realized was that some people approach therapy as a way to push children who are different closer to the, here we go with my new favorite term, species-typical model as fast as possible. Other therapies are designed to mitigate motor weaknesses that can lead to potential difficulties and unhealthy habits later on in life.

pt4 For example, Autumn has an aversion to using her right leg and putting weight on her right foot. I could view this as "that’s Autumn, that is the way she was made and being different is ok" or I could see it as something that should be addressed and give her the therapy she requires to correct this so that when she is older she will not have potential arch pain or hip pain due to how her body naturally compensates for this. I chose the therapy. Now if someone told me that they wanted to use Theratogs on Autumn as a way to make her walk at a younger age, I would have said no because I didn’t care when she was going to finally walk on her own... but if the Theratogs will prevent potential hazards for her in the future... like falling down a lot, then heck yeah, we are going to do it.

I think that most parents of children with disabilities start out (unknowingly) as ableists but grow out of it—in degrees—as their children develop and they realize that being different is ok. The only times that being different needs to be questioned, and addressed, is when it has the potential to cause harm to the child now or in their future.

Childhood is not a race to a perfected version of being human... not for kids with different abilities and not for typical children. It is a time of innocence, joy, learning, and growing. I like it when my friends celebrate those things about their children and my children, as long as the value of the celebration is simply on the child, not on some underlying comparison chart to other children.

pt1 So as with most things, when it comes to ableism and achievement, you need to ask yourself, "Why are we doing this?" If your answer doesn’t fit the definition of ableism, then someday your child will probably be thankful that you did it.

Lisa from Life As I Know It is hosting a blog hop so if you have some thoughts on this topic or just want to read more, check out the links below or add your own.

Monday, February 4, 2013

Compliance and Special Needs

A while back a close friend asked me if I fear that my girls will be sexually abused because their disabilities make them easy targets. The answer of course is Yes. The statistics on this topic wholeheartedly agree, and that sickens and terrifies me.

But I told her that of all my children (and honestly I fear abuse of my typical children as well) the one I worry about the least is Kimani. While she might seem like the easiest target of all, really she would be the hardest for a predator to take advantage of. Kimani is not compliant... not physically or mentally. If you tried to get to her in that way she would fight you like a wild cat, and she would scream like one too. I know this because even I, her beloved mother, can’t get a good look at her girly parts when I need to without enlisting the help of daddy. And Kimani cannot be manipulated with promises or threats... you cannot talk her into anything.

naughty_girlNow ya’ll know Kimani is getting big and strong but isn’t mentally developing anywhere near the speed of her body... which means that her non-compliance and impulsive behavior is getting harder and harder for us to handle. She is always a one-on-one and often a two-on-one kid and can never be left unattended for any length of time, unless she is in something she cannot get out of, like a highchair.

I want to take her to Boston to the group of pediatric neurologists there that specialize in post-meningitis brain injury but in order to get this approved by our insurance I have to jump through hoops locally to show that no one here can help her. The local ped neuro we met with prescribed an MRI and a daily dose of Concerta. Huh, it never occurred to me to drug her but I have done extensive research on Concerta and I could see how maybe this would help to calm her and give her what she needs to control her impulses. After thinking it over, I developed a fantasy where on Concerta she would be able to focus and learn, and maybe even go to our public school in their special education K-2nd grade room. I daydreamed that on Concerta, Summer would become like Autumn.

I filled the script and we tried it out. It was a liquid, and so yeah even hidden in stuff she likes, she spit it out. Then, even more well hidden, she spit it up moments later. But some of it took hold and she was different that day. She was subdued but clingy and she cried for me whenever I left her sight. I told myself that she hadn’t had the correct dose and that maybe she was kind of sick and suffering from a general malaise due to an illness... not the Concerta. I went to the doctor and got a script for the pill form and tried again. I had to come clean with her teachers and school nurse because one of the side affects of Concerta is loss of appetite and between that and a bout of diarrhea they thought she was sick and called me in to pick her up. During the discussion about how she was acting on it at school, her teacher said something like, "Is it worth it if she is no longer herself?"

Wow, just freaking wow. No, no it isn’t worth it. Especially after reading a post that blew me away about teaching our children with special needs to be compliant. Do I really want a little girl who will do whatever she is told by whoever tells her to do it? Am I raising my girls to be vulnerable because I am training them to do as they are told, no matter their own feelings about it?

There is a ton of societal pressure on parents to make their children with special needs compliant in order for them to be included in their communities (schools, extra-curricular activities, church, etc.) In fact I would guess that non-compliance is the number one reason why most kids with SN end up in self-contained classrooms or are asked to leave certain public spaces. And I do get it, I understand that Masha needs to go with the program if she is going to make it in a Gen Ed classroom... but at the same time it is likely that she may never be able to discern which authority figures (and for her that may be any adult or older child) not to comply with... even when it hurts.

So how do you raise well-behaved special needs children who may grow up to be too naive to protect their own bodies, possessions, or mental well-being? I have some ideas but not enough.

My kids are not forced to share everything. In fact they have things that are only theirs and I make it a point to tell them not to share those things. For now it is stuff like their drinking cups (my kids are color coded so they each have their own color cup) and certain pieces of jewelry. I also never force or even overly encourage my kids to show affection to anyone, including me. Heck, I waited almost four years for a kiss from Kimani and I would wait four more if she so chose.

But the most important one of all is that sometimes I allow a standoff between us. If one of my girls draws a battle line in the sand, I do not always cross it and win the fight. Sometimes I let their will be done because they need to know that their will matters even if they don’t have the vocabulary to defend it.

But Kimani... she doesn’t know what color your cup is, whose bracelet is whose, or if you brought a tank to the battle—so unless her safety dictates otherwise—she impulsively rules her universe... and I have no inking whatsoever what to do about it. One thing I do know is that I would rather deal with Kimzilla than turn her into more of a target than she already is.

Friday, February 1, 2013

Authenticity and Vulnerability

I didn’t write that post yesterday to invite ego stroking (though I admit it was nice to hear from so many people that you give a hoot what I have to say.) I wrote it because I was really struggling with how honest and vulnerable I am willing to get in my writing. Because there are consequences that come with being authentic and sharing the real deal.

While the comments I received here and on FB were encouraging, one of them was a game changer. It came from an IRL reader who I went to grade school with. I wish she and I lived close enough for coffee dates because while she was cool in school (heh heh) she grew up to be even cooler and has had more than her fair share of grief and life experience. She directed me to a blogger named Brené Brown who writes a blog called Ordinary Courage. My friend suggested I watch a video, and I did.

That was it, that was all it took to know that I can overcome my fears (and an unhealthy dose of shame) to step off the cliff and be authentic and vulnerable. It’s not like I won’t lighten things up with a cake pop post here and there but I believe it is time for me to dig deeper into my heart and mind and let the b-side of me out of her cage.

Just promise me that if you are going to stick around for it that you will be gentle me :-) Oh, yeah and those of you who know me IRL, just pretend someone else has appropriated this blog. Deal?