A few weeks ago, Communications Associate and parent advocate Rob Hudson sat down with Joe Albert, the 2022 Inaugural Recipient of the Frank Trippett Advocacy and Outreach Fellowship here at The Arc of Northern Virginia. They spoke about both the conflict and opportunity for partnership between parent advocates like myself and self-advocates with disabilities. (You can read the first part of our conversation here.) As they spoke, the conversation turned to some of the social and systemic obstacles people with disabilities can face, and how self-advocates and parent advocates respond to them.
Joe: One individual we worked with in the mentoring program was scared about self-identifying as disabled. I remember all his questions. “Am I going to get a job? Who’s going to hire someone with a disability?” I first reassured him that he can’t be fired for his disability. I informed him that just because he tells his workplace, they can’t do that; it’s illegal. But second, he asked, “What if they treat me badly because I have a disability?” This stuck out to me, like many of my other friends who were disabled. We discussed his past work experiences and the insults and mistreatment he experienced at work. I could see how many words and treatment affected his outlook on self-identifying in the future. When asked about wanting to stay and working for the type of bosses who mistreated him, he responded, “No”. I replied then; “Then it’s the same when you’re self-identifying going to work with someone who won’t treat you well.”
“Did you ever have a boss that mistreated you?” And he said he had. And I asked, “Did you want to stay there and work for him?” And he said no. And it’s the same; we’re not going to work with someone who won’t treat you well.
I realized later I may have been a little tone-deaf. Myself, I have had this before myself. When you have these experiences, they oddly teach you along the way. They show you how to maneuver and learn whose opinion you should value. It’s easy to get upset naturally. These things hurt. And I think that’s where having that parent advocate-self Advocate partnership can help. It can allow you to work through the emotions of the situation and then go, “okay you’re not important, or that viewpoint is just incorrect,” and move on. Because at the end of the day, the person who says, “oh you don’t look disabled,” is not going to be a practical person to work with in the first place.
Rob: Yeah, I guess there’s that value in knowing, and that’s really hard for me. The teachable moment seems to be impossible for me. I don’t know if I ever had an experience where someone said something terrible to my daughter Schuyler in public when she was little, and my response was “Well, let’s talk about this, let me explain what her condition is and how this could go better.” No, I’m always someone who says something reactive and harsh. And I always thought, well, there’s a little bit of value in Schuyler watching me tell off someone who’s being rude, because it at least tells her “Alright, at least someone’s got my back.” But beyond that, I’m not sure what the value of a negative interaction like that is.
It is so hard to look at a situation and simply cut someone loose, to see someone whose feelings are so dehumanizing and are so detached from reality and not want to just grab them by the shoulders and say “No! You’re wrong! You need to broaden your understanding of what human value is all about!” and instead just be able to say “Alright, well, who’s your supervisor?” or “Who else can I talk to here?”
I don’t know from your perspective how difficult that is for you, as someone who’s actually the target of that kind of thinking, as opposed to a parent who feels like it’s my duty to protect.
Joe: I’m not going to say that I still don’t have those moments of having a similar reaction as you say, “no, you’re wrong. You need to broaden your understanding!” But there are always going to be moments where there are situations or scenarios that you can’t make up. They are just so outrageous that you have to project frustration. Sometimes the individual might not have a supervisor. Sometimes these situations will extend outside of service providers. Sometimes it will be in the communities, neighborhoods, private colleges, or other problems where you can’t say who else I can talk to; where’s the supervisor?
The frustration, I think, should be shared when appropriate; it works. I’m not going to sit here and pretend that I’m this Zen individual who’s always calm when trying to get access to my services or care. Sometimes the individuals you deal with are just not interested in helping, stuck in a bureaucratic nightmare, or, as you said it best, “need to broaden their understanding of what human value is all about.” But I think it takes an extraordinary amount of patience to show that frustration and then say, “Alright, well, who else can I talk to?”
Rob: I think one of the advantages to the police interaction events that we hold is, you know, we talk about how these events can help people with disabilities learn how to interact with police, but I think we’re also quietly saying “It’s also teaching the police to broaden their reactions and responses to the community.” You know, you mentioned how much of the ableism in the community is driven by ignorance, and I agree with that to a certain extent. But at some point, I think you have to say to the community, okay, the information is out there. People with disabilities aren’t hidden away, this isn’t the 1970s. They’re in your community, they’re functioning in your community, they’re thriving under the right circumstances, and members of society have to decide whether they are capable of making empathetic space in the world for people who present differently.
My mother used to talk about how you could judge a person by how they treat people when no one is looking. Whether it’s social or economic or whatever, how someone who considers themselves to be in a position of advantage over somebody else, how you’d treat a waiter, or how you’d treat someone with a disability where you might perceive yourself to be in a superior position. How do you treat that person when no one is watching?
I was thinking about this with Schuyler’s experience at the airport the other day, when the gate agent said she didn’t look like she had a disability, and said it right in front of her. It brought up a tougher question. How do you treat someone when you don’t think they actually understand how they’re being treated? I imagine that’s got to be infuriating for self-advocates, when someone starts making assumptions about your capabilities or your intelligence. I feel like this is one of those points where self-advocates and parent advocates converge, even if they converge differently. That feeling when you’re being mistreated or someone you love being mistreated as less than human or less than capable. What are your responses to that? That seems like a point of agreement between advocates, but it feels like agreement is not enough. Strategies for moving beyond that have got to look very, very different for parent advocates and self-advocates.
Joe: I think it’s interesting you mention that line. How do you treat others when nobody is looking? I think it is a challenging process when people do make assumptions about your intelligence. One of the perfect examples of this when meeting a friend after I told them I was diagnosed with Autism was that I looked “normal.” He wasn’t sure if I would be talking. This concern was odd because we had been friends for around seven years before he or I knew about the diagnosis. While there are stories like that where I learned to chuckle a little, there are others that have hurt me more. And in those moments, I agree that parents and self-advocates converge well. I think we all want to be accepted for who we are. For some reason, there is a world out there that cannot understand nor accept that many of these disabilities contain a crucial element; that individuals view and experience the world differently. I’m not sure where I heard that saying, but overall it is how I explain my experience with disability. That’s it. If you phrase disability in such a context, it is a less arduous task for those to get around when having to provide accommodations, be accepting. Of course, nothing is as simple as I just made it.
Joe: I’ve noticed in our system that there are times when our local and state government has still been behind the eight ball on this viewpoint, from disability services and mental health care to education. Much of the focus is not on expanding the idea that the student with a disability experiences the world differently than others but must be forced to conform to neurotypical norms.
If anything, what has come out of these discussions that you and I have had is that parents and self-advocates have much more in common. That’s not to say there are no differences or significant gaps between the two, but the foundations and wants are very similar. My hope is the same as my parents: for more independence, to build skills, a healthy life, etc.
At the end of the day, parent advocates or self-advocates, it’s about protecting and preserving a wonderful community.
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.