Monday, May 2, 2016

Let's Talk About The Gap Between Disabled Adults and Parents of Kids with Disabilities

One morning, not too long ago, I was talking to my grandma on the phone.  Sometimes, we talk about disability-related things, and blogging.  One such conversation took a bit of a shocking turn when Grandma told me, "You know, right up until the time you girls were born, babies like you weren't raised at home.  They were institutionalized.'

I don't know why this came as such a surprise.  I've read of cases of mothers giving birth to medically fragile babies and being advised to institutionalize them as late as 1990.  For some reason, though, the thought never occurred to me, when thinking about my own birth and infancy.

According to Grandma, "We didn't know the first thing about raising disabled babies.  We didn't know anyone who had done it, and there wasn't the internet like there is today, to connect with other families.  But we wanted you.  We wanted to raise you and have you at home with us.  So we figured it out.  Your mom and I figured out how to clean your trach.  Your mom went to every physical therapy appointment with you and learned what was reasonable to expect for you to be able to do and what wasn't."

[Image is: Me and my sis, around age 2.  We are on a hardwood floor, wearing yellow sundresses and pigtails.  We are petting our grandma's cat, Miss Kitty.]


I often think about this when I interact with parents who have kids with disabilities.  There remains such a tremendous gap between us.  I have spent a lot of time wondering why this is.  My friend and fellow blogger, Ellen Stumbo articulates it like this:  "You guys are the first generation raised out of institutions.  Before that, parents always spoke for you.  We had to.  There was no other choice.  Now, though, you've grown up, and you speak for yourselves.  You're the first to ever do that.  I don't think we, as parents, are used to it yet."

When I posed this to my grandma, she also added, "We spoke for you...and we did your thinking for you, too!"

I've never heard it put quite like that before, but I think it makes a lot of sense.  It must be difficult for parents now to step back when their children (or adults in their child's community) speak up about something.  Parents, grandparents, aunts and uncles...I have known all of them to be particularly fierce in their love and protection of me and my sister.  We needed it.  We need them.

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Even when we are grown up, we never stop needing our parents and other adults in the family - but the way we need you sometimes changes.

WE NEED YOU TO KNOW WE ARE ON YOUR SIDE:

It makes sense you are on the defensive.  It makes sense because you are used to fighting for us to have everything we need, want and deserve.  You fought through exhaustion and sleeplessness.  You learned to demand things.  You learned, though you could not fight every single battle, to win the ones you knew were worth fighting.

As an adult in your child's community, we have been where your child is right now.  We know how to articulate what they are too little to share.  Big feelings they may not have words for until they are grown up.  So when we speak up, know we are doing it for your child.  We are on the same team you are.  We want what's best for your child, too.

WE NEED YOU TO BACK US UP:

When we say something is harmful to our community, we are not saying it to hurt your feelings.  We are saying it because it actually harms us.  Trust that adults in your child's community have walked (and rolled) where your child has.  And if we speak up about damaging portrayals in media, or ableism in everyday life, back us up.  Parents and family members love and support us every day, and that is awesome.  Know that boosting our voices about issues that directly impact us is the most amazing way to express that love and support.

WE NEED TO FEEL NEEDED:

I can't think of anything more powerful that a child with a disability can see, than their parents or family members making friends with adults with their same disability.  Kids need role models.  They need to know there are people like them who grow up and are happy.  They need them to know their disability gives them identity and community and a place to belong.  That it is not just something that makes them different.

We are so used to needing people and asking for help.  It's so amazing to be able to help someone else.  So, Mom, Dad, or Grandma, if you have a question about how to deal with your child's hurt feelings about being left out, or if you need a suggestion about how your child can best carry money with them using a wheelchair, or how to address self-esteem issues, talk to us.  We want to help.  And we may have some really helpful suggestions...

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We come from different places.  You know trauma relating to our disability (such as a diagnosis day) that those of us who have not known any different never experienced.

We know difficulty around public perception and attitudes around our disability.  We struggle to integrate our identity as disabled people into our personhood, while surrounded by voices who tell us disability is not a good thing.  That we should ignore it.  Not speak of it.  Use different language...when all of those things are ours to choose.

But we all want the same thing, essentially:

We want your children to grow up knowing they are loved and respected.

We are here, parents.

And we still need you.

***

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17 comments:

  1. Tonia, you bring up such important points! The institution issue never occurred to me before reading this post...wow. I love this whole entire post, but the part that resonated with me the most was when you wrote about kids needing role models with similar disabilities. I love that - it's so true - and I think it can be generalized to ALL people as well. We all need to know that we aren't "the only ones" in any given set of circumstances. Togetherness is such a beautiful thing - and I think that's a huge part of why our friendship means so much to me. xo

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    1. I love your comments, K, and this one is no exception. And the institution issue never had such a personal side to it before hearing my grandma talk about it that way. And yes, I think having role models and BEING role models is a powerful thing <3

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  2. This post is so good. Every parent needs to read it, especially with all the "fight" that has been happening in the last few months between parents and the disabled adults. You do such a great job at reaching out to parents with compassion and understanding. Love this!

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    1. I wonder what's been happening specific to the last few months? I've noticed it ever since I ventured into the world of disability advocacy etc a couple years ago. I am really glad you think this post could be effective, though. I'm all about bridging that gap! Thank you!

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  3. This is really great and very needed. I especially agree with the role model idea, which seems like an idea that doesn't occur to parents but they appreciate it when someone suggests it. I think another reason for conflict is that some people draw too many distinctions between people with different kinds of disabilities. Parents of intellectually disabled kids, or, say, nonverbal kids, I think tend to shy away from or reject disability bloggers like us because our disabilities aren't like their kids' disabilities. In some ways they are different, but I think some folks don't see how the experiences are similar, too.

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    1. Thank you so much! I think the role model idea is awesome. It has been something I kind of dreamed about for a while, so I guess it's a dream come true that there is a 10-year-old out there who calls me her "role model." :) And you bring up a great point about parents shying away, perhaps, because our disabilities are different. I have an upcoming post that kind of addresses that exact point. We are very similar, that's important to note.

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  4. So wonderful to hear you tell us parents to "ask". That really does mean alot. Sometimes we feel so alone and ilequipped to raise our own kids. I personally am going to reach out more to advocates like you...thank you!

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  5. Hi Laurie,

    Definitely, feel free to ask! Thanks for reading!

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  6. I have a disability and I love the "We Need to Feel Needed" part. When my friend became disabled he looked to me for guidance,he needed me and I loved being the one who was helping instead of the one being helped for the first time. My parents found disabled role models for me which helped me find my voice so I am forever grateful to them!

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    1. That's awesome! I'm glad you were able to be there for your friend, and that your parents found disabled role models growing up! That helps so much!

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  7. What I have found through the work with my films is that disabled adults shut the able bodied parents of disabled kids out of conversations due to resentment they had with their own parents and this needs to stop. I also like the "need to feel needed" part. I had an experience where a disabled person looked to me as his role model and it was one of the most wonderful and precious experiences of my life!

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    1. I think it's important to honor the feelings of disabled adults who have experienced difficulties with able bodied parents. These experiences are valid and harmful. There needs to be respect on both sides. I think it's okay for both groups to have our own space sometimes, but also good to reach out to each other when needed. Yes, being able to be an example or a role model to someone else with a disability is so amazing. Glad you've had that experience too.

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  8. What an amazing blog written by an even more impressive young woman. You brought up some important points here. At our centers we believe in keeping families together by helping care for the day-to-day needs of differently abled loved ones.

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