This week on Voices of Disability Pride, advocate Courtney Deuro discusses with WBFO’s freelance disability reporter Mason Ald the importance of self-advocacy in medical settings and the current gaps in support services. Deuro shares how maintaining contact with disability services and medical professionals can help prevent those with fluctuating support needs from falling through the cracks.
Courtney Deuro is a Data Analyst for the Center of Self Advocacy, and an advocate for patient rights. This interview has been edited for length and clarity.
PLAIN LANGUAGE DESCRIPTION: Courtney Deuro and WBFO’s freelance disability reporter Mason Ald discuss the importance of advocating for yourself in medical settings. Deuro says people with fluctuating support needs, including people living with chronic illnesses, face barriers in accessing services. Because of this, Deuro says that keeping in touch with disability services, like ACCES-VR and medical professionals, is important.
TRANSCRIPT
Mason Ald: Hi, I'm Mason Ald, and this is the WBFO Disabilities Beat.
This week on Voices of Disability Pride, we continue our series with Center for Self-Advocacy Data Analyst, Courtney Deuro. Deuro is also an advocate for patient rights, including those who live with chronic conditions. This interview has been edited for length and clarity.
Mason Ald: You mentioned you have a passion for advocating for other people's rights and discovering how things work. Tell me a little bit about that.
Courtney Deuro: I was asked to be on an advisory board for Children's Hospital, and that's probably where my advocacy really started from there. Around that time, my pulmonologist also asked me to talk with some of her patients, peer-to-peer stuff. Someone was diagnosed with a lung condition, they were being put on a ventilator. They didn't want to be on a ventilator, which I fully understood. I had already been trached at that point, so she asked me to talk with them from one kid to another kid. It was just nice for them to see like, "I'm not going to be the only one my age with a trach." That's where it started.
Mason Ald: Why is the awareness of people with those fluctuating support needs important to you?
Courtney Deuro: As some of the chronic illness, I have fallen through the cracks many times, because I don't have the right diagnosis for some services. It's not right because it's a double-edged sword. You have a disability, it makes it hard to work. If we get the supports, then we can work, then we can go to concerts, then we can live life. But the moment you start working and living life, then society sees you as not disabled enough anymore, and so they take the services away and then you fall back into not being able to do things, and it's just this cycle.
Mason Ald: What perspective and skills from other people do you carry with you today?
Courtney Deuro: My ability to work with the medical professionals that I have, like my technicians, my doctors, the ability to work with them as a team. It's like being a sports team, everyone's got a part, and you have to keep the communication going between all of them, and it's not easy to do. Recognizing that I'm on the same team as my doctors, we aren't working against each other. That is a skill that my mom taught me.
Mason Ald: If you could give advice to a younger you or another person with a disability, just getting started on their self-advocacy journey, what would you tell them?
Courtney Deuro: Don't be afraid to reach out to the disability department at a school, especially if you're going to college. Even if you don't need the services for that semester, do not break your contact with the department. Keep your contact going, keep that communication going. If you're offered services through a government program like ACCES-VR, don't turn down the services because you think, "I don't really need them right now." No, stay on top of that, because at some point, you might need the services, but now you got to start from scratch all over again.
Mason Ald: Then, what do you wish non-disabled people understood about our community?
Courtney Deuro: Disability is not, it's not one-size-fits-all, and it's not all or nothing. Just like any other human, life is very gray and there's a lot of in-betweens. There are some days where you got a good day, some days that you got a bad day, and just because you don't visually show that you're "disabled," doesn't mean that you are not disabled, and I wish society understood that. I wish a lot of people without disabilities understood that a lot of us do not look disabled, and that doesn't negate how much we still need assistance.
Mason Ald: Then, lastly, is there anything you've learned in your career that sticks with you every day?
Courtney Deuro: I've learned a lot more about neurodivergence and become more accepting of my own, and also how to speak out publicly and do things like this. I was not good at doing this kind of stuff like interviews until I started working here at CSA, and I've learned a lot about that since being here.
Mason Ald: You can listen to the Disabilities Beat segment on demand, view a transcript and plain language description for every episode on our website at WBFO.org. I'm Mason Ald, thanks for listening.