Perspective in Advocacy: A Conversation – Part I

I’m Rob Hudson, Communications Associate at The Arc of Northern Virginia. It’s my privilege to work closely with Joe Albert, the 2022 Inaugural Recipient of the Frank Trippett Advocacy and Outreach Fellowship here at The Arc of Northern Virginia. Joe is a 2020 graduate of California University of Pennsylvania with a BA in Political Science. Together we bring two very different perspectives on disability.

As a person on the autism spectrum, Joe’s advocacy and political activism have contributed an important self advocacy voice to the discussion of public policy. My 23 year-old daughter was born with a rare brain malformation called polymicrogyria, and I’ve spent much of the past twenty years advocating for her, both as an author and presenter, and as a parent advocate.

Joe and I sat down on Zoom recently to discuss some of the issues facing self advocates and parent advocates, as well as some of the points of both division and partnership between these two groups.

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Rob: So it was interesting, I was talking to someone at an event recently about projects that we had coming up and I mentioned this article. And when I told her what we were going to be talking about, she immediately said, “Oooooh, controversy!” That reaction irritated me a little, honestly, to think that the topic of self advocates and parent advocates and some of the places where we could communicate better was one where just the idea of the conversation would be so fraught, you know? I was curious how you feel about that. Do you think that it’s a conversation that necessarily starting from a place of conflict. Or do you think there’s a better way?

Joe: I don’t understand the initial knee-jerk response to seeing a conversation about the two or between the two sides starting from a place of conflict. That may be the indoctrinated political scientist side of me talking. I think it’s essential for both sides to take in each other’s experiences and opinions. So I wouldn’t call it conflict; both sides want the same thing, just sometimes different ways to get to the same end destination.

Rob: I think one of the things that make it such a valuable conversation, but also kind of fraught with possible conflict, is that I think professionals are approaching topics about disabilities and families with a certain level of, maybe not detachment, but perhaps professional detachment. For self advocates and parents, there is so much emotion at the very front end of any conversation.

I had an experience two days ago, actually. My daughter was in the airport in Detroit coming back from a visit with her mother. When she flies, we always get a gate pass, because her intellectual disability gives her a little bit of trouble. Schuyler’s mother took her to the counter with the disability access paperwork. The gate agent didn’t understand the paperwork. I guess they hadn’t been trained. But out of nowhere, this agent looked at my daughter and said “Well, she doesn’t look like she’s got a disability.”

Joe: Wow.

Rob: I know, right? In the year 2022, that comment came out of her mouth. And by the way, apparently this was during Invisible Disability Week. Obviously, my reaction to that was very emotional. I will give my ex-wife credit, she didn’t end up on the news that night.

The thing was, Schuyler, my daughter was standing right there. She heard the remark.

In situations like that, it’s so easy to let emotions come to the very front, at least as a parent. I think I’m probably leading my part in that discussion from an emotional place. And I don’t think it’s realistic to say, “Well, I’m going to try to do less of that.”

But I think maybe an awareness of that emotional reaction going in, that might be one of the keys to making that discussion work. I’m bringing the emotion to it. If something I’m saying rubs you the wrong way, that’s going to bring an emotional response from you. And not to say we’re going to leave those emotions behind, but maybe we’re making space for those emotions. And I’m not sure exactly how to do that.

Joe: That’s a line I’ve heard, and I think unfortunately many individuals with disabilities have had too. Having to experience a moment with an individual, or structure that’s meant to provide a service and be told to “prove to us you’re disabled” or that you “don’t meet our standard” and that is not only dehumanizing, it can be all of the feelings and more that you explained. It especially makes no sense when these groups, or services have already agreed to provide the service or accommodation.

I know my family; it’s that repetition between hearing that line of you don’t seem disabled or behavior from potential or sometimes even current providers that in which that message can spark that same, a wholly justified emotional response. It can then scare you or push you away from fighting for your accommodations and services in the future. Knowing how to advocate for yourself, in this case, is vital.

But having a supportive parent advocate and self-advocate partnership is essential too. It can be a good defense against bad behavior from the outside world. Having a partnership of advocates is incredibly beneficial. definitely something where sometimes it’s really difficult, where you find yourself in this role where you go into something you’re really excited to be a part of, whether it was college, whether it was The Arc, for any event where I’m like “Oh great, I can’t wait to do this,” and then suddenly you’re like “Oh shoot, I need an accommodation for this,” or “I’m going to have to talk to someone about this, I’m going to have to advocate.” There’s this interaction sometimes with my parents, because I’m like “I’m not sure how to ask for this exactly.”

This is another clear way where instead of conflict you have a working partnership where the parent advocate and self-advocate are working together. I’ll say something to the person who we’re trying to work with to get accommodations from, and that person may not have the best response. And then I’ll have to talk to my parents. My parents take a much different approach sometimes at advocacy than I do.

At first, when I was younger, in my college years- it was more of a teaching relationship. My parents taught me how to advocate for myself. This often left me at odds with my parents as I had a different style than they did, as well as communication issues. I had to communicate with both my college and my parents. As a result, I had more of an emotional response when accommodations were not met. My parent’s experience with these systems taught me patience but to make clear my expectations. During this period, I not only learned to build a partnership with them, But I learned to develop my skills to advocate for myself.

Looking back at those times, I find the emotions and frustration we all sometimes had amusing. Not to say that the situations were not serious. But the source of intensity and passion that not only my parents have for advocating for me is immense; I think that’s why there is much more common ground than most people may realize between self-advocates and parent advocates.

Rob: That partnership is key, I think. I’m just thinking about the airport thing. On one hand I was appalled that the gate agent said this in front of Schuyler. But, when I really think about it, they need to say that in front of Schuyler, you know? They need to have these conversations in front of her. If they’re talking about her, she needs to be a part of that. And if it’s terrible, then it’s terrible. It’s not something she needs to be protected from. And I think that’s a point that is very tough for a lot of parents.

I do a lot of work for the trust department. What drives my thinking about the special needs trust is the idea that parents are worried about what happens when we’re gone. And that’s a completely reasonable fear. I always joke that my plan is to not die. “Problem solved, I’ll be here forever!” There’s that fear of running out of time, that things need to be in place.

I think for a lot of parents, when their children grow up to have a level of autonomy, it can be hard to step back and realize it’s okay if things go off the rails a little bit. It’s okay if my adult child actually learns from running into some obstacles that are difficult, that hurt their feelings, that they have to learn to overcome.

I think of Schuyler at 5 or 6 and my feeling of, “Oh my God, the world is just going to eat her up. The whole world is just a monster waiting to eat her.” But now she’s 23. That level of advocacy is simply not appropriate for her. But having had that responsibility so long, it’s hard to let go of that, it’s hard to transition that.

What I’m getting from you is that is it’s not so much about letting go, it’s transitioning to more of a partnership. You’re working in partnership with your parents. So it’s not “my way or their way.” You’re going to take care of the things that need to be taking care of because you’re a totally competent intelligent adult and when you do run into obstacles you have this very emotionally invested, practical support system behind you.

Joe: Yeah.

Rob: Is that accurate?

Joe: The feeling of running out of time is something that extends to the self-advocate as well. They want to be independent. To gain skills as well. I know for myself the fear of losing that partnership is great. There is a great worry of what will happen when my parents go and whether or not I will be unable to have everything in place.

What you hit on is essential. The want for your child to have stability, to be safe, and to have the best life that they can live. Every parent wants that. To flip that around, every individual with a disability wants that. And when we incorporate all of the current world events that have happened in the last two/three years, I think that’s where many more cracks in the system have shown in the conflict between parent advocates and self-advocates.

I think a key thing is ensuring that everything that the system that works with parents also recognizes that the Adult with disabilities needs to be recognized as an individual. Too often, I’ve had it where my parents have been asked about my accommodations or programs for me without me knowing. Their response, thankfully, has been ‘ask Joe’, not us. But it’s been something that I think the system gets stuck in, too.

I think as the smoke cleared from Covid, so to speak, after the last two years, it proved that the ‘my way or the highway’ mentality really doesn’t work.

Rob: Whenever I’m looking at an issue or a conflict that’s going on with my daughter, I have to stop and think, “Am I wearing my advocate hat right now, when I should just have my dad hat on?” How much of this is just baked into parenthood, this need to transition to a different kind of advocacy? That’s universal parenting. At some point, a caveman had to say, “Alright, I guess I’ve got to let him go hunt that mammoth by himself.” But add onto that, there’s that fear of the unknown, the idea that well, is this going to be the thing that’s too much? Am I stepping back when I’m needed the most?

Maybe that’s a point where there is some collaboration between the two groups, for self advocates to be able to strategize with parents about what that next phase looks like. I think that’s a part of the conversation that hasn’t been happening enough.

At certain points, it becomes “Okay, here’s my little castle that I’ve built, and there’s your little castle”, and we feel protected within our positions. And that’s not inappropriate in and of itself. Self advocates need to be able to say “I have a right to live an autonomous life where I’m making decisions for myself, and I’m driving, I’m in control.” And parents need to be able to accept that and at the same time say “The day you were born, I took on a responsibility that I’m never going to graduate from as a parent in the way that a parent of a neurotypical child would.”

It’s a lifelong role, and you know, I love this role. It’s the primary relationship in my life. I don’t like to think of the person I would be if I hadn’t had Schuyler. I remember that guy. I don’t want to be that guy. But at the same time, I need to know what the next step looks like. I need to learn how to let her drive. And maybe it’s like those driver’s ed cars they used to have, where there’s a steering wheel on both sides so the instructor could grab the wheel if they needed to.

In that respect, that requires parents to really open up our minds and our emotions to making that transition, and it requires an unbelievable amount of patience and tolerance for our screw ups from self advocates as they watch us fumble through that process.

Joe: And I think I have the same thought from the opposite viewpoint. Exactly what you’re saying, but from the opposite perspective. I think there’s that driver’s ed car, that’s how I view it with my parents.

Rob: You know, I’ve been writing about disability issues since Schuyler was diagnosed in 2003, but at some point I stopped talking about living entirely independently one day, and instead starting using the phrase “independent life with supports”. I feel like that goal is the most realistic goal and the most productive goal that parent advocates and self advocates can work towards.

Joe: I think having that intersection of those two working together as more of a partnership, you’re in a good place. And when services try to cut either side out, that’s a thing to be aware of, particularly when there are communication issues. Whatever those supports are, it may not even be parent advocates, but whatever they are, it’s important to the person to have their supports in place.

(More to come in Part II of this discussion.)

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The Arc of Northern Virginia is dedicated to advocacy on behalf of citizens with intellectual and developmental disabilities. You are encouraged to get involved with our efforts to effect meaningful change in the system! Visit our Advocacy page to learn more. If you need help, we’re here for you. And if you’re interested in becoming a more empowered advocate for this community, visit our Transition POINTS guides and our Resource Library.