Similar to what's said above, we know you mean well as nondisabled parents. Sometimes, it even helps to know you share our anger, our hurt or our frustration. But you don't get it. Because you can't. Nondisabled parents might experience occasional slights, events of outright rudeness, etc. But there is a distinct cultural difference that is being ignored.
As disabled people we experience ableism all the time. Every day. I experience it nearly every time I leave to go out anywhere. It's exhausting and damaging to constantly face an onslaught of reminders that in this society, we are viewed as less. Less important. Less valued. Less worthy. Less lovable. Less human.
Allow your kids with disabilities the space to process with whichever safe people they decide they need to talk to. As above, even well-intentioned attempts to relate can feel dismissive. We are coached by our nondisabled parents in the same way they were coached by theirs - to not let difficulties bother us. To just move on. But that can be dangerous for mental health when factoring in disability.
Your kids need space to talk and process. They need to know their pain matters and to be able to connect to those in their own community about it.
Though I am not autistic, I recently discovered I'm neurodivergent and I recognize my memory functions much the same. I have memory from as far back as two years old.
As much as I am sure people once in my life would prefer my memory did not function this way, it does. I remember things. Especially traumatic, difficult or harmful things. Those stick with me. So I really related to Carlyle's comment (elaborated on by Kevin above.)
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"I have had quite a few moms ask me when their autistic teenager will stop bringing up things that they said when their child was four or five years old. And I tell them, “When you die because it's in there.” - Carlyle King
"
I wanted my ballet slippers, and I cried and I cried and I cried... And you’re sorry that you yelled at me.” - Brooke (From you're sorry)
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"I'm a disabled parent of a non-disabled child. Several years ago, my daughter wanted to buy a game. And this was when she was kind of new to having an allowance. And so she asked her mom if she could buy the game and Kristin said, “Go talk to your dad.” And so she did. And I told her, I didn't mind her buying the game, but just looking at it, it seemed like it would be something that I couldn't play because it required a significant amount of manual dexterity.
And so she ordered the game and it came. And after she had had it for about a day, she brought it to me and she said, I think I figured out how you can play this game. And so she put one hand behind her back and she demonstrated all of the tasks involved the game. And when she was done, she said, “Do you think you can do that?”
I wish we could figure out some way to put that into the relationship of parents with their disabled child, or for that matter, parents with their disabled peers." - Carlyle King
I've delved into this phenomenon myself in writing disability fiction, where I explored these reverse dynamics with two characters (one whose father was chronically ill, and the other who had a brain injury herself, and was being raised by nondisabled parents.)
I really became aware of it reading Michelle Obama's book Becoming, in all the interactions she and her brother had with their father, who had MS. They were so respectful of him...and I believe that comes from the inherent respect children already have for parents.
But when the dynamics are flipped and the child is disabled and the parents are not? It's difficult, for some reason, for nondisabled parents to transfer that logic: "Hey, I am raising a tiny human being here. Someone with their own autonomy and consent. Someone who will experience a lot of life differently than I do."
This might cause some to cringe, but I do feel it to be true personally: I think there's quite a bit more ownership / entitlement when it comes to nondisabled parents of disabled kids. We often need more ongoing support and for most of us that does mean relying on our parents perhaps for longer than is traditionally expected.
That does not entitle a parent to claim their disabled child like a belonging. That is just plain dehumanizing.
Regarding Carlyle's example, I am so with him. I do wish that there was a way to somehow transfer that inherent respect a nondisabled kid feels for their disabled parent into other dynamics and interactions featuring disabled people.
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Kevin: I could tell that when this friend, the elderly gentleman with Parkinson's would get really bad stuttering, he didn't like it, but you could also just on the faces of people around him see them tune out. The extra time wasn't worth him being part of the conversation.
Ellen: Yeah, but that happens to everybody.
Another oops.
This gentleman with Parkinson's experience might be relatable for many reasons. But by immediately saying "But that happens to everybody," minimizes his experience. Because what happens to him does not happen to everybody.
Now, I extend the benefit of the doubt here, because I know Ellen really well (and because the example she ended up giving did compliment Kevin's example. This may seem nit-picky - and I'm aware of the many factors going into podcast making, being interviewed, etc. It's spur of the moment and not everything comes out how you mean it.
But in the interest of continuing the conversation and relating this back to the larger issue of bridging this gap that exists between these two groups, I'm going to address it. It is really easy to alienate us. It does not take much.
Luckily, it also does not take much to self-correct here:
"A similar thing happens to my daughter, who has Down Syndrome," for example.
That's specific. The disabled audience (including Carlyle) knows you are speaking about another disabled person and not "everybody" at large.
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"I don’t get invited to a lot of things and I have started asking some people why that is. And some of the responses that I've gotten include, “Oh, I wasn't sure if you could do that,” or “I wasn't sure if you'd be able to enjoy that with your disability.”
And I would really like the opportunity to make that decision. I would like to be invited to things, and it feels good to be invited even to something that I am pretty confident that I wouldn't be able to do just because it feels like a person wants to connect with me and they're leaving that decision up to me. So I really wish we had more people that were willing to put the focus on their friends and walk slower, talk slower, send out the invitation." - Carlyle King
I've experienced this, too. More often in high school and college (when I had only nondisabled friends) they would say things like, "We were all jumping on the trampoline and I was going to call you but then I realized you couldn't and I didn't want you to feel left out."
Not calling us in the first place doesn't allow many feelings of love, acceptance or welcome.
Let us decide what we can handle. And when we tell you one way or another, respect that. (That includes, if we tell you something is a hard no, in no uncertain terms? Don't keep pushing. Don't tell us you know we can do it if we just try. Trust that we know ourselves and our bodies.)
And if we tell you no, understand that doesn't mean stop asking forever, like Carlyle says. For us, it means, we'd like you to think about ways to adapt. We do this all the time. If you are nondisabled and this does not come naturally to you, ask us if we have any ideas, or things you could join us in doing.
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"It is my friends who are disabled who get my life. And actually, you talked about the peeling layers that disabled people are expected to disclose so much about themselves?
I find myself being happy that I get to disclose so much about myself. That maybe for someone who's not disabled, it's not appropriate to write, to talk about certain things, and it's not appropriate to address certain situations, or talk about things in a way that doesn't make you be super grateful, the expectation that you should be grateful about all the things all the time, even if they're not done with the right intention..." - Ellen Stumbo
Let me start by saying I am super glad that Ellen (and perhaps others who relate to her statement) can feel understood and validated by us. Being able to disclose more about yourself, to be more honest and more forthcoming is freeing in certain respects.
Also, though, this statement comes from a place of privilege. Ellen (and other nondisabled people / parents) have the luxury of enjoying the choice to freely share with their friends the details of their lives.
This is very different from the lived experience of disabled people who, as she said are expected to disclose. We are expected to forfeit privacy around medical diagnoses, personal details, and more to an oftentimes entitled nondisabled public. We have to disclose the most personal details about our lives to keep our insurance, to be approved for adaptive equipment we need to move through the world.
Just another instance to gently point out that we are coming from different cultures here.
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"What's the connecting point? Our kids. But then aside from the kids, what is the connecting point? Where is the friendship? And we talk, we've said this. If you're a parent who has kids with disabilities and you don't have any disabled friends, that's the problem, especially if you expect your kid to go to school and to have their friends include them if we're not modeling inclusion. You know, how can we expect children to do it, if we're not even doing it ourselves?" - Ellen Stumbo
It is very important to recognize the need for genuine friendship and I appreciate that sentiment is in here.
I just want to add that disabled adults are our own people. As I discussed above, if I know your kids and you're a nondisabled parent? You can bet I love the crap out of your kids. I will fight for them. I will do everything I can for them. That is not, and has never been the issue.
But it becomes tricky - a little fuzzy - when a nondisabled adult's sole existence in a friendship is in this kind of specific context. Where we are somewhat expected to be 'on call' so to speak.
Now, this is not the case in every disabled / nondisabled friendship and I am not saying that, just that the dynamics can get blurry. So it's good for everybody to be aware that the disabled adults are being valued and loved and seen for who we are - not just in terms of what we can give you - regarding insight about your disabled kid.
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Ellen: I posted on Facebook, that I said, “If I don't fight for my kid, who will?” Which is true, like, like I go to the IEP meetings, but you said…
Carlyle: Disabled people will.
Heck yes, we will!
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"I think as parents as we come to recognize that the fierce disability advocates that are changing the world for our kids are actually disabled adults. At some point, that was the parents, because if you had a child with disability, they would go to an institution. Now we have a generation of fierce, amazing, powerful disability advocates." - Ellen Stumbo
Absolutely, this is so important. Ellen also said in my Bridging the Gap post that we are the first generation of disabled people raised outside of institutions, so that does and has taken some getting used to for nondisabled parents.
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Carlyle: We have already seen that I can go into a group that is focused on this particular topic and I can present ideas and meet with resistance, and then Kevin can take the very same idea...
Kevin: That I learned from you.
Carlyle: And he can write it in his book and somebody in that same group will turn around and compliment him for this great idea. And it's the same idea. It's just the messenger that's different.
Yes absolutely. This happens so often.
If someone cannot communicate in an expected or widely acceptable way they are often dismissed or simply not heard. But someone who can communicate in a more expected and / or widely acceptable manner, then they get all the credit and that's not fair.
I think a lot of it comes down to one's ability to soften a point, or a "wholesome approach" to quote Ellen. If sentiments are not expressed gently enough, or softly enough, we are shut down.
In doing this, autistic, neurodivergent, disabled people are getting the message that nondisabled feelings matter more than we do. They matter more than our safety. They matter more than our dignity. Than our personhood.
Some of us cannot soften ourselves for the comfort of others because of disability.
If someone came and punched you in the face (and you are nondisabled), you are not expected to soften your reaction for the person who punched you. To be aware of their comfort first and foremost.
But often, this is what disabled people are forced to do.
We are told if we get angry people won't listen.
But if we are calm, people do not think there is a problem.
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Carlyle: If we all work together, we can cover all of these pieces way more efficiently.
Kevin: But that would be hard to do if those of us who are parents of disabled children don't see disabled adults as our best resource.
As a disabled adult myself, I definitely want to help, as I've said throughout this piece. I think it's vital that we are considered experts in the disabilities we have and are welcome to teach disabled kids about our culture and how to adapt etc.
But I would caution nondisabled people we are not only resources.
We are fully human. We had lives before we met you and your kids and we have lives still. We crave connection, too, and more than that, genuine friendship.
Seek us out because you want a friend - the same reason you seek out nondisabled friends.
We're out here.
So, let's start talking.
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