Wednesday, February 5, 2020

My Thoughts on Bringing Together Parents of Kids with Disabilities and Disabled Adults

Yesterday, I listened to the podcast Bringing Together Parents of Kids with Disabilities and Disabled Adults hosted by Ellen Stumbo, and featuring guests Carlyle King and Kevin Timpe.

[Image: A precarious foot bridge extends across a gap into some trees]

The first feeling I had honestly when listening was discomfort - not so much with the topic - but with the power dynamics (which ironically, was something discuss later, though not in the context of the makeup of their panel.)  While it's obvious all three are friends, I felt an immediate imbalance in the conversation (with Ellen and Kevin presumably neurotypical / nondisabled and Carlyle autistic and disabled.)

It's something subtle.  It's difficult to describe.  And I can only speak for myself, but it felt like Carlyle was being called the expert, but still in the position where he had to 'wait to be called on,' so to speak.  That's not exactly what I mean, but it is a feeling that's difficult to put into words.  He was obviously on the outside regarding the dynamic.

In situations like this, I think it would have been helpful to have equal numbers in the dynamic - either a 1:1 or a 2:2 situation.  I know that it's not always possible.  It's also not a criticism, just something I noticed.  (If it must be imbalanced, let the person with the privilege be the one; allow us to have backup.)

I've heard about this topic before.  I've even written about it myself.  So, I was very interested in what would be said in this conversation.  I'll be quoting excerpts from the transcript for clarity, so I better respond to each point.

***

"Most of the time, it seems, parents are focused on changing their kids so that they fit into the world better. Or maybe just don't stick out quite so much, which on a certain level, I kind of understand. But the problem with trying to fit a square peg into a round hole isn't that it takes so much pounding, it's that it destroys the peg." - Carlyle King

This was so my experience as well, and I think many of us with disabilities can relate to what Carlyle's saying here. Especially if we are surrounded by nondisabled caregivers.  Arguably, they are all well-meaning.  They are all doing what they're doing with the best of intentions.  But when you are the kid who spends your entire life - babyhood, childhood, teenagehood, and even adulthood in a space where people around you are trying to change you?  That really is destructive.

And (again speaking for myself) if there was love in the actions, I could not perceive it.  Love doesn't hurt - we're told this often - but then we're whisked off to massive surgeries.  Forced to do what we cannot physically do.  Threatened that if we do not keep up with PT, there will be more surgeries.

Related: When I Wanted a Magic Nursery Holiday Baby To Magically Take Away My Surgery

***

"As a parent, when you first recognize that your child has this identity, it's almost always because of a medical context or a school context. And then, you know, with depending on what the disability is, there's medical issues that do need to be addressed. There's therapy issues that do need to be addressed. There's educational challenges that do need to be addressed. But all the early input that frames how you think about this is given by these professional fields that if we look at them more carefully, are really really problematic in their assumptions about disability. That’s then made worse if parents don't directly know disabled adults." - Kevin Timpe

Absolutely!  A big part of this divide or gap, as I call it, is that usually nondisabled parents have only been taught about disability in a singular context:  It's Terrible.  All of the professionals are telling you it is something that needs to be fixed, rather than something that is a part of their identity.

Related:   Parenting Kids with Disabilities: Identity

What nondisabled parents tend not to see right away is that we (with disabilities) have our own culture.  We have certain ways we move, talk, eat, subjects we discuss, adapt, encounter ableism daily, etc.

This is not a bad thing; just a different thing.

Also, on the subject of nondisabled parents don't know disabled people prior to their disabled kid(s) being born: Just like you network to find other parents like you, you can network to find disabled people.

Kevin touched on something really important above as well, regarding nondisabled parents not knowing any disabled adults until their disabled kid is born.  If this is the case?  It is a fine line to navigate.  Know that (speaking for myself again) I love your kids.  I would do anything to protect them and help spare them from any or all of the struggles I endured growing up.

But.

I'm also always aware that while there may be genuine friendship, there is also a lot of implied labor on our end.  It's one thing if we disabled adults volunteer information and suggestions.  But if we are just being looked at as groups of symptoms that match your kid's symptoms - in a What-Can-I-Glean-From-You kind of way?  It can begin to feel gross and dehumanizing.

I guess I'm saying, if you can - make the disabled friends before you happen to have disabled kids.  Value us because we are valuable, not for what we can give you in terms of information about your kid.

***

Carlyle: And this is something that really comes down to a matter of respect of how the person would like to be addressed. 

Kevin:  One of the reasons why I think the respect is hard...

Now, Kevin goes on to speak about the first time many nondisabled parents hear about their child's disability from medical professionals.  These people are professionals in their fields and nondisabled people, especially, come up believing that doctors do possess a certain authority and knowledge about things.  The problem comes when that doctor is without the lived experience of disability.  (The majority of doctors don't have this.)

Doctors are experts in their field, but unless they share your child's diagnosis?  They are not the expert in that.  Many nondisabled parents don't know this, and so, are not only being given lopsided information about their disabled kid.  They are also being told how to feel about it.  (Sad, grief-stricken, because their kid is somehow 'lacking.')

I want to bring us back around to Kevin's initial response to Carlyle, which was: "One of the reasons I think respect is hard..." 

This is an on-the-spot example of the kind of thing disabled people experience all the time.  Carlyle's simply stating that autistic individuals (and the collective community) have preferences around how they would like to be addressed.  And that it is a matter of respect, to honor those wishes.

When disabled people hear things (like how hard respect is) over and over and over, we get the message that we are hard to respect.  Because honestly, it is not hard to consider others.  It's really not.

Nondisabled people show respect for each other all the time.

- They introduce themselves - their title is usually respected - assuming they don't fall into another minority group.

- They drop something.  It's picked up by someone else without a fuss and handed back.

- They ask, "What?" and a snippet of conversation is repeated for them patiently.

- They are at their limit, and their family recognizes this and offers to give them a break.

Respect is not hard.  Overcoming ableist biases is hard.

***

"Most non-speaking autistic people who are given access to alternate communication methods eventually do learn to communicate. And they will eventually come around to say, “I understood everything that you said.” And parents really need to go about this, expecting that to happen, and to understand that there is a person that they're talking about. And my whole message and that of other autistic advocates is that we as people deserve to be respected and to be treated with dignity." - Carlyle King

 “I UNDERSTAND THAT I AM LOVED BY YOU BUT SOMETIMES I FEEL SO MAD AT YOU BECAUSE YOU BELITTLE ME...WHEN YOU TALK ABOUT ME AS IF IM NOT THERE.” - Rhema (from Hard Conversation)

"HI MY NAME IS FOX I TALK WITH LETTERS AND NOT MY MOUTH. PLEASE KNOW THAT I UNDERSTAND EVERYTHING YOU SAY BUT I AM NOT ALWAYS ABLE TO RESPOND. I AM SORRY IF MY BODY DOESN'T LISTEN TO MY MIND I AM TRYING TO ALWAYS BEHAVE BUT IT IS HARD. I HOPE YOU HAVE PATIENCE WITH ME I AM AN INTELLIGENT BOY ONCE YOU GET TO KNOW ME." - Fox (from April 2014 - The first year of conversations)

"YOU CAN EXPLAIN THAT WE ARE NORMAL ON THE INSIDE AND THAT WEIRD QUESTIONS SOMETIMES HURT OUR FEELINGS.  SO KNOW THAT WE ARE VERY SENSITIVE.  YOUR ACTIONS LEAVE LASTING IMPRESSIONS." - Ryan (from Ryan Answers Readers’ Questions)

"When I was younger I got yelled at often about things I could not control. People thought because I could not talk and I moved in repetitive ways I was lost in my own world with no thoughts or feelings. I paid attention to everything." - Phillip (from Can Good Come from Autism?)

***

"I'm thinking for example, sensory issues, right? Like you have some sensory issues and it's pretty common for individuals with autism. I feel like I have sensory issues but I know my sensory issues are most definitely not the sensory issues that you experience. So, if I was the parent of an autistic child and they have sensory issues, chances are, you understand what that means much better than I do because you experienced that as someone on the spectrum." - Ellen Stumbo

This is such a common take by nondisabled parents.  They try so hard to relate, and only have their own experiences to go off of.  Because of this, when friendships develop between disabled and nondisabled adults, those of us who are disabled can sometimes feel our experiences encountering sensory issues (as Ellen brought up) are unintentionally minimized.  Because, for a neurotypical person, sensory issues are momentarily unpleasant.  For an autistic or neurodivergent individual?  Sensory issues are painful, and sometimes incapacitating.

Trying to relate is a very human thing.  We understand that you (a nondisabled parent) are trying to connect with us.  What we need from you instead is first and foremost, your concern.  

If we are having sensory issues and you know about it?  Ask, "Are you okay?" or "Do you need quiet?"  (Yes / no questions require less energy and let us know that you care about the pain we're experiencing.)  

Know that if an autistic / neurodivergent individual is bringing up sensory issues, it's because they are harming us.  We need you to listen.  To take us seriously.

Saying, "I have sensory issues, too," (though Ellen was not saying it in this manner) feels minimizing, since we know that for neurotypical people, the struggle you feel (while totally valid) is widely different from what we experience.

Recognizing that neurotypical sensory issues differ vastly from autistic sensory issues feels like a good start, though.

***

"My daughter, who has Cerebral Palsy, will come home and she'll say, “This happened!” Somebody said something or did something at school, and I can sympathize with her and be upset with her and I’ll say, “Yes, I get it.” And she’ll say, “No, you don't." - Ellen Stumbo

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.

***

"As Carlyle said, for many autistic individuals, it comes with sort of hyper memory. Right?  This memory that doesn't let things be forgotten. And I remember you telling me that and thinking, “Wow, what are those things that when I was still in this learning process, when I had these problematic assumptions about what disability was and what it meant... What are the things that I said that if my son's memory functions that way, when he's 25, 35, 40, right, he’s going to remember, ‘Dad, this is what you thought?’” - Kevin Timpe

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.)


***

"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)

***

"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.

***

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.

***

"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.

***

"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. 

***

"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.

***

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!

***

"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.

***

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.

***

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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