Throughout Disability Pride Month, our Engagement Coordinator, Devon Anderson, connected with disability advocates across the country to talk about our collective work for the community at this time. This edited transcript shares her conversation with Ashlee Brady-Kelly.
What does being part of the disability community mean to you?
ABK: It starts by first sharing that I deserve community care and support. I’m somebody who sits in a semi-ambulatory and also now deteriorating space. So much of what I’ve been conditioned to know and understand is be grateful for what you have. It starts by saying, can I be safe with you and share if today is really hard. I can be grateful for the 30 years that I’ve had, and the last five have been nothing but a fight. It starts with being safe enough to say, are we just safe enough to sit and share in the fact that our circumstances are different, but our feelings as we move through this are so similar. All of us have felt like we’re losing something. All of us have felt like we don’t belong. All of us have felt judged and ridiculed and infantilized. Can we start there instead of being bridged by the differences that the outside seems to try to want to divide us with, you know?
DA: With all of these threats and setbacks and longstanding needs that have not been met, how do you actually still show up every day in that power of: I matter? I’m here, I have a disability and I do deserve that care?
ABK: I think there’s two parts to it. One: I absolutely, non-negotiably have one day of my week where I allow myself to say, this sucks. It’s not about having pity or being angry. It’s having a day where I absolutely honor that I can and will get through this, and it’s really hard right now. I don’t have to be strong about it. I don’t have to be negatively positive. I can just show up empowered and gently say, this is hard. If you can’t hear that, you can’t have access to me. Because to expect me to show up enthusiastically in a world that doesn’t celebrate me, doesn’t keep me safe, doesn’t see me and is actively taking from me is unrealistic. Then you absolutely have to surround yourself with appropriate supports. I have a professional team of two counselors that I see weekly and bi-weekly. I have five people that are my go-to, what I would call, disability friends. No matter what is going on, I need somebody that can hear me from a non-ableist perspective, that the world hurts right now.
DA: Oh, I love that. So, when you’re thinking of these things, what does community care look like to you in these times when the world hurts?
ABK: Oh, wow. I find myself really drawn to this quote by Judy Heumann: “I want to see a feisty group of disabled people around the world… if you don’t respect yourself and if you don’t demand what you believe in for yourself, you’re not gonna get it.” Community care looks like taking about space. It means owning your identity, first, and recognizing what it is that you deserve, and settling for nothing less. The world may often ignore us, not see us, or think that we have needs, so community care means changing that. Showing them that we are deserving of everything, and where it isn’t inherently given, we gently stand up for ourselves and ask for it, even demand it. It is about accountability, not accusation, but awareness and inclusion.
DA: Oh, the inimitable Judy Heumann always hits the right spots. Her voice right now is so needed. We lost so much wisdom when she left us. So thinking about Disability Pride Month, what are you celebrating this month?
ABK: This month I had to recognize that my spirits were affected and understandably low. I realized it was not going to be authentic or appropriate to shout to the mountaintops that I am enthusiastic and proud and strong. I couldn’t do that. I have to turn that inwards when I am at like such a medical burnout with so many appointments and say, okay, I get that you’re tired. But then I need to take all the fire and turn it to make that appointment, make that call, fight that really irritating provider. You have to show up for yourself. I have to do that before I show up for everybody else. If it’s not starting with me, if I’m already at a deficit. I can’t give you what I don’t have. It was a reminder to me for the first time in arguably ten years, where I had to come from a place of me first instead of the community so that I could stand stronger to give back to the community when I’m able to. Not because I have to.
My education is in social work. As somebody who works in crisis, I think one of my natural abilities is being able to see the behind the scenes caution lights that I don’t think people see until something is burning. So whether it’s somebody’s tone, whether it’s how somebody is showing up in conversation, I notice tones and body messages and signals. One of my strengths is to give somebody permission to rest. I am a huge proponent if somebody has a meeting with me set days in advance, and I’m noticing they’re showing up a little differently. I might put myself in the uncomfortable position to be like, hey, would this be beneficial if we met not today? Would that give you time to kind of breathe? Would that feel like a relief? Or is this something you really want to get to today? Because it might give somebody the permission to go, oh, maybe I don’t have to show up today. Maybe I can just breathe. Without that being like punitive or even dismissal. I want to engage with my loved ones all the time. Most of the time I can’t do that enthusiastically. It’s being able to give somebody permission to pause and know that that’s not antagonistic or any less loving. That is in fact a huge show of love that says let’s reconnect when we are able to at our best time. And I feel like a lot of people are afraid to say I can’t do this today.
DA: We’re looking at the challenging times that we find ourselves in. What part of the work are you committed to carrying forward through these challenging times that hopefully can help illuminate when days don’t feel so hard?
ABK: I am going to be the loudest person in the room. For one of my jobs, I work in a hospital. I heard a staff person last week joke and say we’re gonna have an influx of patients come because they can’t receive care. I took a breath for a minute. I turned to them and said you are a nurse. How dare you criticize somebody for accessing care that they no longer have options to elsewhere? We had options before and we don’t now. So I’m going to need you to sit with that and think about where that’s coming from for you, that you even felt comfortable enough to say this in a hospital in a room full of colleagues.
Secondary to that, I give myself permission, ironically enough, to not always address every little thing. There’s always going to be something, some microaggression, some ignorant thought, which may not be grounded in fault, hurt, or cruelty, but it’s always going to exist. But that doesn’t mean I have to fight against or address every single one. At least for me, it feels like because I am so loud, I have to address every single one. My job is not to educate everyone – You’ve got to do that on your own – But for the bigger implications, and the bigger thought processes that could harm someone in the short term I’m absolutely going to be the one that speaks up. You’ve got to check your thought process and your privilege. Especially in a healthcare environment, that will harm someone. Check yourself.
Ashlee Brady-Kelly has a Bachelor’s of Social Work. Her personal interests are disability awareness and critically reflecting on (and challenging) the societal barriers and factors that influence our society. She has lived experience as a person with disability, which opened her eyes to this work. Her own personal drive is what keeps her motivated to continue working towards a future of hope for the community. Ashlee was a participating panelist in the 2024-2025 Disability & Health Webinar Series conversation on autoimmunity and disability.