Yo soy La Lay

adventures in family, faith, and Down syndrome

Advocacy #14: Accept truths, not outdated information

on October 14, 2015

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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