Yo soy La Lay

adventures in family, faith, and Down syndrome

Advocacy #21: Inclusion Part 1

The first in a series on inclusion and what that means to us….

Because everyone can add to the richness of community.

Because everyone has value.

Because no one likes to be excluded.

Because no one likes to be told they can’t.

Because it’s good for everyone.

EVERYONE.

Because there is always a way.

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Advocacy #20: Can we please stop with the 92%??

I apologize in advance for striking a nerve maybe.  But also maybe not.

This is the last time that I will reference this topic here on Yo Soy La Lay.

There is a statistic often shared in our community, most especially by new parents, who seem to have “chosen the unthinkable” by going through with a Down syndrome pregnancy.  The statistic is that 92% of women abort their babies when they find out that it has Down syndrome. Yes, I even (sort of) referenced it back in the “early days.” 

Let’s just get this out of the way first:  Is this a valid stat?  Well, no, not exactly.  It is based on a 1999 comprehensive study of other mostly European studies done between 1980 and 1998.  It also only accounts for those with a prenatal diagnosis (because clearly, those of us without the testing didn’t terminate).  A more recent study (2011) of a variety of international studies found that the termination rate is 65-85% and varies tremendously based on maternal age/race/ethnicity and other factors.  See the full abstract here.  That number still doesn’t give any indication of how many babies are born with a birth diagnosis.  We really don’t have a solid number on how many babies overall are diagnosed versus how many are terminated.

Beyond the whole issue with the statistic not actually being true, can we talk for one moment about the implications of centering our advocacy efforts around whether or not people have abortions?

Bear with my terrible analogy here.  Imagine you are trying to pick a restaurant for dinner.  Looking through reviews, you see that 92% of people would not recommend eating at the local Dutch restaurant.  You can see that a couple people are raving about it, saying it’s the best meal they ever ate, but overall, the vast majority, 92%, insist that this is just not a good restaurant to try out.  They haven’t tried it, but someone they know told them it might make you sick, it’s overpriced, or it’ll ruin your ability to enjoy a nice movie afterward because you’ll feel so miserable.  Likely, upon seeing that, you are going to do one of two things: you’re going to avoid that restaurant altogether or if you decide to dine there anyway, you’re heading into it with quite a bit of fear about whether you’re going to end up with food poisoning or a nasty waiter.

Do you catch my drift?

Look, I am all in favor of lowering the number of abortions, period.  Does that statistic (even the realistic one) cause me pain?  Yes, of course.  It infuriates me.  But, I think it is important to choose our brand of advocacy carefully.  And my preference is to advocate for the relevance of the lives of people with disabilities through knowledge about what our (very mundane) life is actually like.

You will never convince someone not to have an abortion by telling them that they are a horrible person or a baby killer or a sinner or that they are cruel and heartless.  You convince people with love, with facts, with hope, with information, with resources, with options, with a real understanding of life.

I understand the conversation started by the statistic.  I respect the conversation.  It’s just not a conversation that I choose as a central theme in my advocacy efforts.  We all advocate differently…. that conversation is not my way.

And now, comic relief:

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Advocacy #19: Give the siblings a little credit!

It is a little disheartening when people worry (quite intensely) about Ellie’s role in her sister’s life.

My sister does not have any kind of disability.  In reality, someday, she could end up with one.  We all could.  One accident, one illness, one life event that doesn’t go as planned and we may find ourselves needing help.

I would walk my sister to the ends of the earth if she needed it.

In a 2011 study (abstract linked here), 94 percent of siblings age 9 and older expressed feelings of pride about their sibling. 88 percent said they felt they were better people because of their sibling with Down syndrome. Only 4 percent said they would “trade their sibling in” for another.

In our home, Ellie finds plenty of ways to shine, but she also adores her little sister.  I’m not naive enough to think that every day will be fabulous and that there won’t be times when Ellie resents the attention or the treatment that Tessa gets… but believe me, those same feelings will come from Tessa about Ellie as well… as they do in any family situation.

What I am saying is that it is helpful if you just treat them as what they are – siblings.  Not as one being dependent on the other, not as if one may be a burden, but as two sisters who lean on each other for support from time to time.  Often times, advocacy is in the simple act of just letting us be typical.  We are just typical.

These two… typical.

IMG_9539

(Yes, that is a pen drawing on Tessa’s forehead.  Ellie thought she needed a tattoo.)

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Advocacy #18: Encourage doctors to get it right

Did you know that several states are working to pass laws right now that would require doctors to give current, unbiased information to parents who are given a Down syndrome diagnosis for their child?

If you think like I do, you might wonder why we need such a law.  It seems odd, doesn’t it?  Why wouldn’t a doctor provide parents with accurate and up-to-date information about this diagnosis?  Why wouldn’t you expect that doctor to know what he is talking about and trust that he is giving you the most current data?

Well, sometimes they don’t.  Actually, many times, they don’t.  Page through the book Unexpected and you will hear lots of stories about medical professionals who got it wrong.  I believe that ours got it right.  And I believe that part of why they were able to communicate so well with us is because we have some groups that really work hard to educate medical professionals on what life is like now with a child who has Down syndrome.

The National Association for Down Syndrome (NADS) is one of our local groups and is actually the group started back in 1961 when a group of parents in the Chicago area decided to raise their babies at home rather than sending them into institutions.  Among a lot of other programming, they send groups of parents and advocates into area hospitals to meet with medical professionals and help them learn about our lives.  They encourage physicians to ask questions and open the line of communication so that others can move past their initial fears. 

On a national scale (and even international), the Down Syndrome Diagnosis Network is also working hard to provide current, relevant information to medical professionals so that they can work with families.  They offer a variety of print materials for doctors and nurses to read for heir own knowledge, as well as items to share with families.

Both of these organizations are well worth your time to check out.  We are so thankful that we and others can access this information!!!

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Advocacy #17: Let me act my age.

A letter from Tessa to everyone:

Dear everyone,

My mom says to tell you that she promises not to make a habit of talking for me.  She keeps telling me that I will have to “advocate” someday too and that she will speak up for me until I do it on my own and then she will speak with me, not for me.

But I want to tell you something!  Did you know that soon, I will be two?!  Can you believe it??  My birthday is coming in a couple short months, and even though I don’t walk yet or talk yet, I’m a toddler!

I know it’s hard to remember because sometimes I do things that babies do… And I’m little, so I look kinda like a baby.  But ya know what?  I really like it when you treat me like I’m my age.  

I hear that lots of people like me feel the same way!  It can be hard when people treat others with Down syndrome like they are kids, even when they are not.  Once my mom told me that she hopes people will always “presume competence” and make accommodations for areas that challenge me, but not “lower the bar” or treat me like I don’t know what it means to be an adult.  I don’t really get what she means by all that mumbo jumbo.  All I know is that I want people to believe that I’m not a baby.  I just want to be one of the kids! 
You can advocate for me by showing the world that I am my age.  If you always treat me like a baby, it might be harder for me to grow!  Plus, I get a little bummed out when other kids my age get to do fun stuff and people think I can’t be a part of it.  Let me play with kids my age – let me have the same privileges and experiences that they do (especially if it involves treats).  I will raise to whatever bar you set for me, so make it high. 

Love you!

Tessa

  

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Advocacy #16: Yeah, again.

After an interaction I had at school today, I feel the need to once again mention the whole “stop saying the R word” thing.

Crazy, I know.

I cannot believe that I still have to say it, but yep, you adults have to work on this especially.  The children learn from you.  Break the cycle.  For heaven’s sake, enough is enough.

Now, onward.

  
I needed a lot of cookies today, y’all.

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Advocacy #15: Know about Ruby’s Rainbow

Know about Ruby’s Rainbow.

Like them.  (Search “Ruby’s Rainbow” on Facebook)

LOVE THEM.

Support them:  https://www.rubysrainbow.org/donate/

Share them.

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Advocacy #14: Accept truths, not outdated information

Holy cow, there is a lot of bad information out there.  And one of the greatest challenges that we face is combating that bad information with updated, current, research-based knowledge about life with Down syndrome.

Because of advocacy and groups of people willing to understand individuals with Down syndrome, there has been immeasurable progress in education and therapies to help live with some of the physical and mental challenges that they face because of their extra chromosome.  The world for a person with Ds today is nothing like it was even 30 years ago.

We do not expect that Tessa will live at home with us…. unless she wants to.

(After all, I do live with my parents these days, in case you forgot.)

We do not believe that she is any less likely to graduate from high school than Ellie is.  We know that if she wants to, she has post-secondary options, including college.

We do not expect that she will be forced into a job that she doesn’t like just because it’s the only thing available for someone “like her.”   We are here to help her follow her dreams, whatever they may be.

When you hear someone speak a non-truth about Down syndrome, one way to be an advocate is to correct their misunderstanding.  We believe in expecting that people know nothing and that we are here to teach them.  It’s a pretty constant inner struggle for me, but I have found that I get much better reactions with positive correction than being hostile… and I certainly feel much better than when I don’t correct someone.

Examples:

Them:  Hey, Maggie, I’m so sorry about this diagnosis.  Aren’t you guys worried that she’ll always live with you?

Me: Well, actually, research has shown that life in group homes or even independent living is very possible with Down syndrome.  We fully expect that Tessa will be able to live on her own.  Group homes are also less expensive than putting people in institutions, so we know that that is for sure out )plus institutions are just bad news bears).  And really, even if she lives with us, she’s kinda fun and she’s my kid, so I’m really good with whatever.

OR

Them: Wow, well you know, at least she’s pretty high-functioning!

Me: Well, actually, how she functions doesn’t have anything to do with Down syndrome.  People with Down syndrome either have it or they don’t.  “Mild” doesn’t exist.  However, they experience the whole range of abilities just like the typical population.  And even if she were to struggle more than others, we’d make it work.  She’s just a little human and we adore her.

OR

Them: I once saw this guy on the news that was helping some other guy with Down syndrome eat a meal in a restaurant. Isn’t that awesome?  Faith in humanity restored!

Me: Well, actually, it’s kind of awkward for me to talk about because I’m not really sure how that person with Ds feels about being the subject of someone’s pity that is now being broadcast all over the world.  I think it’s really great when people are kind to one another, I just think we do a lot of good when we take the dignity of each other into consideration before we take pictures of it and throw it out there for the world to see.

Speak the truth always.

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Advocacy #13: Radio silence

This really IS me taking the easy way out tonight.  We’re a little swamped with baseball around these parts.  Instead of my usual ramblings, enjoy this nice video from Kid President:

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Advocacy #12: Learn some sign

If we can accept that 1) behavior is communication and 2) people who have special needs don’t need to be shuttled off to their own separate events in their own separate places, then we probably need to address the ways that we can help make reasonable accommodations to the environment so that all can be included.

A lot of people who have special needs have trouble with communication.  Maybe their ears don’t hear in a typical way, or their mouth has some difficulty with the words, or they need some extra time to process what is being said or expressed… there are a lot of reasons that a person may need extra support with communication.

In our world, we have relied heavily on sign language to communicate with Tessa.  Back when she was quite young, I struggled with whether or not to introduce sign.  As a language teacher, I know the value of input and I thought that inputting both words and signs would keep her from learning to speak.

I was wrong.

There is a decent amount of research that shows that using sign can actually enhance the ability of all children to express themselves and learn to use speech (see an overview of the research with citations from Signing Time here).  For us, it has been very powerful.  Tessa does have a few words (no, moo, down, definitely some others) and coincidentally, most of the words that she says are not the ones that she signs.  She also has a lot of feelings.  Her signs help her communicate those feelings and mean less frustration for both of us!!!  Her use of sign is strong; she has about 15-20 consistent signs that she can use in a variety of ways (mostly to ask for “more cookies please”).

Everyone in the world does not need to go out and learn a bunch of sign.  It probably wouldn’t hurt if you wanted to pick up a sign or two… maybe more if you are going to need to communicate with Tessa on a regular basis.  More importantly, you can advocate for the needs of others by accepting that people will communicate in a different way than you do and by practicing patience as they process and work to express themselves.

I cannot stress this enough – the more we can support and normalize some of the needs that people have, the less marginalized they might feel.  The less marginalized people feel, the better we are as a society.

--eeyore:

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