This month, Disability Rights North Carolina celebrates Disability Pride Month! In this episode, Casey Mason, Development Coordinator interviews Jen Andrew, Communications Coordinator, and Stacy Gannon, Investigator/Advocate. They talk about their experience with disability, their paths to diagnosis and what disability pride means to them.
Don’t miss this great conversation!
Listen to the podcast episode here.
The content of this program is intended for people who are blind, have low vision, or have print disabilities. Hello, this is Casey Mason for the North Carolina Reading Service. Today’s Legal Matters is underwritten by the Apex Lions Club serving the community since 1937. To learn more about the services provided by the Apex Lions Club, go to apexlions.org. If you have comments or questions, please call us at (919)-832-5138. As mentioned, I’m Casey Mason with Disability Rights in North Carolina. Today’s topic, we’re talking about National Disability Pride Month. It’s celebrated annually in July and recognizes the contributions of the disabled community and the division of a just society where people with disabilities have power, equal opportunity and freedom to make their own decisions. With me is Jen Andrew and Stacy Gannon. Good morning to you both.
So as persons with invisible disabilities, I just wanted, if you’re comfortable, give you a chance to kind of introduce yourself and your diagnosis and any other bits of information. I think it would be important for the listeners to know about you.
Sure, I’m happy to start. My name is Jen Andrew. I’m the communications coordinator at Disability Rights North Carolina. I’m autistic with ADHD and I live with chronic illness. I like to say my experience of autism can be summed up that I live with volume turned up. So noise, sound, smell, emotions all feel far more intense to me than they generally do to my neurotypical peers. Also, the impact of sensory overwhelm also feels more intense and can take me a lot longer to recover from, whereas most people can relate to the experience of being in a really loud environment or something very bright. But generally, most folks will recover once they leave that environment. For me, it can take days or even weeks to kind of return to homeostasis. The other side of this though that I think often gets missed is I experience sensory joy also intensely. So the art literature, music that I interact with is a joyful whole body experience that I just love.
And Stacy, go ahead and share a little bit about yourself as well.
My name is Stacy Gannon, and I recently got hired to be an investigator and advocate for Disability Rights North Carolina. I have many diagnoses, some of which were discovered more recently. I was diagnosed with Bipolar I disorder with psychotic features, the onset of which was very sudden at age 20, and now I’m 40, so I’ve lived with it half my life. I also have what is called substance use disorder. And funny enough, I just realized this yesterday as I was preparing for this podcast. Today is my 13th year of sobriety from alcohol and stimulants, or as they call it in 12 step fellowships, my 13th birthday. So I’m officially a teenager. And after years of therapy I’ve come to learn, I also live with Obsessive Compulsive Disorder or OCD, Complex PTSD and social phobia. And those diagnoses or labels are helpful to me at this point because I can’t change or alleviate something until I know it’s there. I’m coming to realize I’ve always had these diagnoses. I just didn’t know it until now.
Well, Stacy, congratulations on the anniversary.
Thank you. I think that’s something to be celebrated.
Hopefully you can take some time today to really focus on what that means for you and to celebrate with those that support you. So appreciate you both being very vulnerable this morning and sharing something intimate about ourselves that typically other people may not know without us being willing to share. I can relate as a person with an invisible disability. I have a neuromuscular disorder. It is uncontrolled contortions or muscle spasms that are involuntary that you wouldn’t know because luckily my diagnosis is controlled with daily medication use, but it is something that’s very close that without that medication, I would lose my ability to work, to independently travel, to be able to have the freedom and the choice to make decisions throughout my life.
And so disability rights is something that’s really important I think, to each of us. And it’s something that we’re here to celebrate through disability pride of saying, “Hey, there are people out there that we can join together with and celebrate and connect with.” And there’s a lot of great conversation around disability pride. So sharing a little bit more and just because I know that some of our listeners may have experienced some of the similar things that we’ve went through. And Jen, can you share a little bit about what was your journey to diagnosis like?
Yeah. I’m happy to share. And first, I want to thank you both for sharing. That was really powerful. When I was young, as I got into school, I loved learning. Learning was an absolute joy. I was what’s known as hyperlexic. I started reading at two in preschool. I was leading the class lessons and that I really enjoyed. I started to struggle about the time I went to first grade. I went to a bigger school. A bigger school meant more kids, more noise, more sensory input. And that experience for me was very overwhelming. And school went from being a great joy to kind of a struggle. Along with the sensory issues, I found friendships difficult. I experienced bullying, some isolation until about I’d say mid middle school when I learned to do what’s called masking. I changed what I perceived as different about myself. I was a little less forward with some of my special interests, and quite frankly, I got really good at it.
I became very social. I had a big group up until the time I met my husband. We’ve been married now for 25 years. I have three kids. I’ve been employed since I was 14 and done a lot of things. From the outside, I’ve always looked pretty okay. What people didn’t see as part of the theme of invisible disability were the days I couldn’t get out of bed, the intense long-lasting migraines sometimes as long as a month that were triggered from sensory overwhelm and stress. The events I missed, including some for my kids and the intense guilt of being a mom who couldn’t always show up the way I wanted to for my kids. I had several episodes like this probably about every two years that resulted in missing weeks of work at a time. I was frantic to find a solution. I went from doctor to doctor to doctor, trying to figure out why I kept having these sort of mysterious pain and fatigue episodes.
And quite frankly, most of them were pretty dismissive. They kind of said, “You have three kids and a busy life. When the kids get older, you’ll have more energy. Just sort of hang in there.” I also ventured down the alternative practitioner route. I did Reiki and yoga and all kinds of diets, just really trying to feel better and function at the level I wanted to, but it didn’t work. I did feel some mitigation of symptoms, but it wasn’t quite the fix I was looking for. What finally led to the path towards diagnosis as my oldest child was diagnosed in about third grade with ADHD, and some of those symptoms sounded very familiar. Suddenly I understood I struggled with executive function and keeping my house and tasks the way I wanted to, but it didn’t really explain the pain and the fatigue that lingered. And finally, a therapist said words that changed my life, which is, “Has anybody ever told you you might be autistic?”
And at first I thought with all of the stereotypes I’ve seen, it doesn’t feel like me. I started doing a lot more research and eventually I did get a formal diagnosis and most recently found out I have Ehlers-Danlos, which often co-occur with autism, and it’s a connective tissue disorder, so that leads to pain and fatigue. So once all of these pieces were in place, I experienced tremendous relief. I knew I wasn’t broken. There was nothing wrong with me. I just had a different operating system. And now so fortunate because Disability Rights, North Carolina has been extremely accommodating and some of the small things I do like receive written instructions or have fewer meetings mean I can manage my energy and I can show up for work and my family and my friends and the way I really want to.
Well, I appreciate you sharing and the fact that you were able to receive compassion from the therapist who actually was able to take the time to listen, to help understand and to help you really move forward towards that diagnosis. I think that’s one of the critical things that a lot of people struggle with is being able to have those supports in place and being able to be heard. And I really love and want to highlight again the fact that you said, “I’m not broken. I’m not different, I just have a different operating system.” And being able to understand that there’s pride in not being “normal.” I don’t know anybody who can “say they’re normal,” but being able to recognize that and recognizing the joy and earlier as you said, the love and the passion for arts and other sensory pieces that you’re able to find joy and you’re able to find love and compassion for yourself. So I appreciate the chance that you were able to share that. And Stacy, same question for you. Share a little bit more about your path to diagnoses and maybe what some other people may have experienced similarly.
There is no way to keep this one brief. So I will say that I grew up in a broken home where alcoholism and abuse runs deep. My three-year-old self responded to that complexity with a decision to be an overachieving perfectionist who intellectualizes everything and cares a whole lot what you think of me. And when I say you, I mean everyone on the planet, strangers. So when I took my first drink at age 13, I remember all that noise in my head, just went away. The relief was something indescribable. I remember feeling this is what it feels like to be normal. And that’s interesting because on the outside, nothing was “wrong or different about me.” In fact, people in general praised me constantly. I was a straight A student and an athlete who played the flute and studied French. I was checking all the societal norms boxes very purposefully.
But I was a blackout binge drinker from day one. I mentioned my onset of bipolar disorder being sudden, and I suppose that’s because it wasn’t picked up on until something was so severely wrong, it was undeniable. I was just two courses shy of my graduation from UC Davis with a bachelor’s in sociology and a minor in French. When I started not to be able to understand my professors, when normally I was tracking just fine and sometimes two steps ahead of them. The world seemed to become like a dream, but I knew I was awake. So I started trying to explain why I was feeling this way and it felt like the Truman Show movie. I might be dating myself, where everyone was in on something and then I failed my final, which I’d never even gotten a C before, and which means I wouldn’t be graduating.
That’s when my world went black and I started sleeping 18 hours a day just hoping I’d wake up and this would’ve all been a nightmare. I wasn’t talking either, what doctors called catatonia. So no one knew what was going on in my head. I slept through the entire summer and couldn’t answer basic questions about myself. I would concoct these elaborate stories trying to make sense of this reality that no one else was experiencing. My parents brought me to my first of many trips to a psychiatric facility, and there I was being questioned by the nurse if they give you those who’s the president questions, orientation questions. And she said, “Do you know why you’re here?” And I said, “To give my liver to my father.” And I had seen an ad about checking yourself for liver disease when my dad said we had to go to the doctor, and that was the story I told myself, that he needed my liver.
So the paramedic wrote down, “You were psychotic, you were delusional.” Made me sign it. And I said, “Just take my liver.” It took me about a week to realize I was in a psychiatric unit and I was meeting in the broom closet with my psychiatrist because there was no other space there to meet. And I just burst into tears and pictured one who flew over the cuckoo’s nest and was like, “Where am I?” And the doctor said, “Oh, the medications are working. Okay, you can go home now.” And he diagnosed me with psychotic depression because he wasn’t aware of any mania, nor was I, and he didn’t really set me up with any outside supports. I didn’t have them. And so I ran to what I know, which is the bars where I discovered a new drug that would help me alleviate some of my symptoms.
And it was cocaine, which led me down some very dark years. I did go to rehab and it wasn’t until I sobered up that I was able to really take a look at the bipolar disorder and get on mood stabilizing treatments, but those don’t come without some hefty side effects. I get muscle dystonia and have to be rushed to the ER. I’ve broken out in deadly rashes. Some atypical antipsychotics actually make me more psychotic. Because of the side effects and a general dislike for big pharma, I’ve tried and failed getting off medication many times. I seem to be able to be okay without medication and have once gone for a year with relative stability without it. But inevitably a trigger would occur and something outside of my control and I would end up back in a psych hospital.
I once had a sponsor who convinced me that the medication I was taking wasn’t true sobriety and I just needed to work the steps. So I came off my medication and at two years sober had a psychotic break again. So to manage all of these things, including now OCD and I can’t really get into all of them, but I manage this with a beloved psychiatrist who I’ve seen for over a decade. I manage my wrap plan, which is a daily inventory, a daily check-in of how I’m doing. I meet with a therapist weekly and I attend three, 12 step fellowships. So it’s just a lot to manage, just to keep it baseline.
Well, and Stacy, I think just there’s power in your story through perseverance. And same with you, Jen, to be able to advocate for yourself and to be able to navigate such a complicated system that oftentimes is not the most compassionate, doesn’t have the most empathy, especially with an overwhelmed medical systems that may be kind of forced in, forced out, trying to get a diagnosis, trying to understand what’s happening with us. It’s a very complicated and either often cumbersome situation that we feel a little lost when we’re kind of going through that process. And so I feel like there’s a lot of people that have experienced that when dealing with invisible disabilities. I can relate to both of your stories and that when I was 10 years old, I started having the involuntary muscle convulsions and didn’t know why. I was a typical developing kid.
I played sports. I enjoyed music and arts and running and playing outside and playgrounds, all the fun things that kids do until all of a sudden I was having 40 to 50 to 60 muscle attacks today and would go to doctors and they couldn’t tell you what was wrong. I did test after test, after test. It was two years into my disorder that I was finally diagnosed. During that time, my parents were going through a divorce. I was told that it was psychosomatic, that I was making it up. That was conditional of other environmental factors. It was because it was a rare disorder that nobody was picking up on it. Luckily, my parents continued to fight, continued to press, and tried to continue pressing for answers. During that time, the school decided that they didn’t want me at school because I was a liability, even though otherwise I was a typical kid.
I wanted to learn. I wanted to be with my friends. Any of the coaches said I couldn’t compete. I couldn’t be on the team because I was a risk, I was a liability. They were concerned about what might happen if I would contort the wrong way or potentially hit my head and cause a risk of liability for the club or the school. And so there was a lot of disassociation from what we thought was atypical until I was in a doctor’s office that somebody told my parents, “Hey, I think that you should go talk to this person. I think this person might be able to help support you.” And I was so nervous and so anxious that when the person walked out and called my name, I stood up and immediately dropped to the ground. The person within 15 minutes said, “I know what’s wrong with you. I’ve been studying this for the past 10 years. I would like to try some medical treatments and I would like to put you on a medication.”
Within two weeks, the symptoms stopped. I went back to being a normal kid. Throughout the last 20 years of life, I am an able-bodied person. I consider myself to be a typically developing person. I was told that this condition may be degenerative in time. So I took that to heart and I started climbing and biking and kayaking and traveling and trying to do as many things and what I thought may be a short amount of time that I had. I found out as I developed later in life that my timeline’s a little bit more extended than that, that really the medical professionals I was working with didn’t really know much more than I did. They just knew something was wrong and there was a medication that fixed it.
Even to this day trying to find a new neurologist or trying to find a new provider, I’m facing barriers to treatment. The other day, they said, “We don’t want to give you new medication. We don’t want to work with you unless you’re able to provide your original diagnostic information.” I was 10 years old, I was 12 years old. I don’t have that information. I don’t have that. So now I’m facing a potential problem with a provider that says, “I will no longer give you that medication unless you’re able to provide a 25-year-old document,” that I have no idea… I’ve had multiple retired providers, hospital systems, family care providers, and I’m continuing to try to track that down because it’s important to me to continue to understand my diagnosis and what that means. And really in being able for each of us to share that is to let people know that disability pride comes with struggle, it comes with hardship, it comes with real life experience.
It comes with the fact that every single one of our stories was somebody there who said, “I believe you. I support you. I stand alongside you and I can continue to help that you figure this out.” That each one of us knew that there was something happening internally that we couldn’t necessarily describe. We couldn’t necessarily determine what was our fix, but we knew that we had to try. We knew that we had to continue to advocate, and we knew that we had the energy and the hope that we were able to get through it. And so I think for anybody listening that is currently struggling through that, I think one of the biggest messages is that eventually, all three of us are examples here that this struggle, just because we’re here today doesn’t mean it’s over. We’re continuing to work through it, but it’s got better.
And we’re continuing to learn. We’re continuing to grow, and really even as I sit here, we’re continuing to support each other. We’re continuing to build that network of trust of people that we can really rely on, who understand us and who really want to love and just see the best for us. If we lived in a world where we were able to do that with every single person we met, man, how beautiful would that be? But often we’re not very quick to disclose our identities. We’re doing that today in a vulnerable state to encourage others to celebrate their disability in a way that maybe they’ve hidden it, maybe they don’t want to talk about it, maybe they’ve not seen it as something to celebrate, but we’re sharing today that it’s something that makes us unique and it’s who we are as people.
And so as you’re continuing to connect with people throughout your lives as you’re continuing to grow, how quickly or often do you identify your disability as you’re meeting new people, as you’re creating new relationships, as you’re maybe starting with the new employer, what’s that process like of being able to say, “I have a disability and I’m proud of who I am?” What’s that process like?
Thank you. First of all. I love everything you just said. I have to say that super inspiring because I think community is so important. I try to be open. I like to say that I’m vulnerability forward. So I feel like if I tell folks about my disability, they may feel comfortable also and seen. I think the problems we face as a society are enormous, and it’s going to take all brains and people of diverse background to come to innovative solutions, generally have had really positive experience disclosing. I’ve asked for things like captions at meetings and written instructions, and people have generally been great. And if people have negative preconceived ideas or their stigma, I try to meet people with where they are, plant a seed and hope that my words might change their mind at some point down the road.
Stacy, I want to give you a chance to answer the same question. How quickly or often do you identify your disability?
Well, as I think you can tell from this podcast, I tend to share, some people might say overshare, which could be valid, but I’ve come to realize that has more to do with them and less with me. Also, their opinion is theirs. They have the right to it. It’s none of my business. I’m comfortable talking about these things. It’s a part of who I am. What’s more difficult for me is being okay with other people, not being okay with me identifying my disability. And that’s a part of my whole social phobia thing. I’m overly concerned with people’s opinions of me, and that is something I continue to work on.
Well, I think even just having the willingness to share today and continue… Again, each one of us in our own way is continuing in that journey. The journey of a disability pride is not one and done. It’s not over. It is us. It is who we are, and so as we’re continuing to grow… We have just a few minutes left, so I really want to end on the high note of as we’re celebrating disability pride, in a few quick sentences, what gives you hope?
Thank you. I would say finding community and seeing how many people are really encouraged and excited to help. I think my own experience in community, finding other people like me and feeling seen means that I have the energy and strength to fight for other people whose needs are greater than mine.
And Stacy, same question.
This sounds so cheesy to me, but find your people. I couldn’t do this life without the very few people out there who understand me. I’m slowly learning to be okay that most people just might not understand and that’s okay. But life is so much more carefree and doable for me when I have a quality core group of people around me. And I think if you don’t have that and that’s something you want, put yourself out there and seek and you shall find.
Well, I appreciate you both sharing so much today and being so vulnerable. And I agree with everything that you just said. Being able to find the people that are most compassionate to stand alongside you, either of those are family members, friends, colleagues, coworkers, members of another organization, or just somebody that you’re able to connect with in a very significant way that can understand you as a person and how that you would like to be celebrated in the accomplishments and the goals and the dreams that we all have. So I think being able to find those people and being able to celebrate that pride alongside them. So if you are a person with a disability, either invisible or other, this month, we encourage you to share your story, to encourage others to do the same, because you never know what somebody may be going through and what might be able to help somebody find that connection in that community.
So with that, I want to wrap up by saying thank you again, both for joining us. I look forward to continuing to work with you at Disability Rights and learning more about your stories and how that we’re able to advocate for the lives of others. And we’re going to go ahead and wrap up today. The content of this program, again, is intended for people who are blind, have low vision or have print disabilities. My name is Casey Mason and I’m reading for the North Carolina Reading Service. Today’s Legal Matters celebrates Disability Pride and was underwritten by the Apex Lions Club, serving the community since 1937. To learn more about the services provided by the Apex Lions Club, go to apexlions.org. If you have comments or questions, please call us at (919)-832-5138.