by JoyGenea Schumer with no assistance from AI
Almost exactly to the date, in 2001, I stood up at my college graduation from Saint Cloud Technical and Community College and gave a speech, and in that speech, I said I was dyslexic.
My photo and a piece of my speech made it into the local newspaper, which was read by thousands of people at the time. I was no longer in hiding about my different brain. That was the moment when I decided to stop masking my spelling challenges and start to embrace my different thinking.
It didn’t happen overnight, but slowly and surly I stop apologizing for just being me. It felt so good when I launched my coaching business focused on coaching dyslexic, ADHD, and autistic individuals. There was no hiding after that title was attached to my name.
Over the past twenty-four years there have only been a hand full of times I have wanted to hide my different thinking and neurodivergences, and pretend to be what other people want me to be like. It has always come from a feeling that it wasn’t safe for me to be so transparent. That maybe there was so much hate that it was safest to hide.
A couple of weeks ago I felt that pit of my stomach feeling again. Like maybe it’s not safe to be open and honest about my differences. By safe I mean that people might cause me physical harm because of it.
It came the day after the United States Secretary of Health and Human Services, Robert F Kennedy had a press conference where he was going over the ADDM (The Autism and Developmental Disabilities Monitoring) Network report.
ADDM is a surveillance system used by the Centers for Disease Control and Prevention (CDC) to monitor the prevalence of autism spectrum disorder (ASD) and other developmental disabilities in children. It provides data on the current status of ASD prevalence and trends over time. Among other things he stated this,
“I would urge everyone to consider the likelihood that autism, whether you call it an epidemic, a tsunami, or a surge of autism, is a real thing that we don’t understand, and it must be triggered or caused by environmental or risk factors. We need to address this question seriously because, in my opinion, for the last 20 years we’ve collected data but not made real progress in understanding what causes autism or how to effectively prevent it or treat it effectively.”
While this wasn’t the quote that made all the click bait from the press conference it was the one that concerned me the most. In the past when people of authority have used words like, “epidemic” and “tsunami” to describe a disease it has brought forward some good results and some equally horrible ideas as solutions.
I had an emotional reaction to this conversation. The emotions that came up for me were: shame, anger, embarrassment, frustration, sadness, humor, guilt, shock, confusion, and surprise.
I proceeded to spend the next week, thinking about the labels and views people apply to other people and the judgement that can come with those labels.
How the labels can make you feel bad about who you are, they can cause you to fear for your life, they can make you feel defective, and at times, less than, especially if people only point out the worst parts of having a “terminal condition,” and that is what people typically do, they focus on the worst parts of something and that is all a majority of people know about it.
It was interesting to go through all of those emotions daily. I tossed some positive reframing at it, but that just felt like I was spraying perfume on a pile of elephant dung. It was not the right solution. I then went on a four-hour research binge to try to make some sense of why RFK is so focused on this topic and has this perspective. I planned to have a whole social media post.
The truth is you can never fully know why someone feels the way they feel, but I did come up with some reasons that made sense to me and the few people I have shared my insights with. By the time I was done I realized I was less an activist and more of an advocate. I value and appreciate the activists, that is just not my style.
The research didn’t bring me the closure I wanted and didn’t make me stop feeling like I wasn’t safe to be myself. Then around day seven as I was pulling back from the label and the stigma I realized that if I was feeling this wave of emotions, after all the years of growth, support, and learning I’ve had, I could only imagine what other people and parents were going through.
That is when I realized that my way out of this feeling was to accept that I was not going back into hiding, to embrace that people may start to make fun of me again both to my face and behind my back.
I realized that if I can stand up strong and compassionately demonstrate what this label can really look like and show all sides of it, then I can make sure no one gets stuck thinking they are the labels other people give them or they assign to themselves.
We are NOT a “terminal condition,” or only non-tax paying citizens, or a plague on our government.
We are many of the brightest people leading exploration, technology, and business.
As of the writing of this. I am thankful for the week of discomfort and unrest I felt. I was reminded that it is OK to be depressed, to question my skills and abilities, and to check in on my purpose. In the end it helped me to reground in my passion for being a coach and leader for the next generation of different thinkers and if RFK is correct about an increase, that is kind of exciting to me that there is going to be a whole lot more of us.
I am the captain of this life. I am not the labels that people apply to me so they can feel comfortable. This is my life, and I am going to live it to the fullest, your lack of vision is not going to hold me back and keep me down.
Let me know how you deal with the labels that get applied to you.
Thanks for lending me your ear,
JoyGenea
Transcription:
Okay, so a couple of weeks ago, there was some news about neurodiversity — a lot of news actually about neurodiversity — and, um, well, the topic of my article this week, and kind of the topic of a lot of things this week is: I almost went back into hiding and wanting to pull… pull up the “I’m not neurodiverse” mask that I used to have, and tried to hide who I was, tried to hide my misspelling. Like, I almost pulled that back up.
And it has been — it’s been over 20 years, I realized — actually almost 25 — that I haven’t felt that way. I just have not been living in that life of complete masking, and “nobody knows about this,” and “I have to try and cover it up.”
Um, it literally was in 2001 when that came — when that shifted for me. I was graduating from college, and I was so damn proud of the fact that I’d gotten through school.
‘Cause I truly, um, went into that experience — my post-secondary education — believing that I was very, very stupid. Um, very dumb. Um, yeah. That I had no ability to even participate in school and probably shouldn’t be there. But I was. I was gonna try.
Um, ’cause I really did not want to work a warehousing job the rest of my life. And so I was — I was gonna try. And I was — I remember when I first went back, I was comfortable. I was like, “I’m gonna at least get Cs and Ds. Like, I can just do what I did through high school, and then I’ll at least have something in the end.”
Um, it turned out in the end — and this is why I actually asked to do a commencement speech, begged to do one honestly — it’s because in the end I graduated with honors and a 4.0 GPA, and surprised myself in a lot of ways. And it was incredible, and it was a wonderful moment.
And so I give the commencement speech. And, as it so happens — obviously, the press was there. And, um, the local press at the time, in 2001, was the major outlet. They did an article about the graduation, and I made the article and a few quotes. And, of course, I was quoted as talking about my dyslexia, which I mentioned in my speech.
And so in that moment, I’m no longer hiding. Um, from that — the mask is kind of off. I don’t exactly run around and talk about it after that, but slowly, as the years go by, um, I — I do recognize how it — it’s playing into my life.
And as I continue to learn more and more about it, I become more and more, um, genuine about letting people into that fact, and just saying, “You know what? It does suck. My spelling’s really bad in that email. I’ll continue to work on that — which means I’ll proof this 10 times before it goes out.”
But that was my reality. And it was wonderful to take that mask off, and to not be feeling that anymore. And really, by the time I decide my coaching really needs to go into this area — at that point, I’m all in. Like, at that point, when you’re like, “I coach neurodiverse people with dyslexia, ADHD, and autism” — that kind of sums it up. Like, you’re not hiding at that point.
And anytime people ask me, like, “Why do you, you know, why do you coach those people?” And I’m like, “Oh, because I am a different thinker, and I feel best equipped to provide the support, services, and coaching that they’re looking for. Because I knew what I needed and was struggling to find at — over all these years.”
So why I’m sharing all of that is the fact that I hadn’t thought about masking. I hadn’t thought about this feeling that happens. Anybody that’s neurodiverse knows this feeling. Anybody that’s a little — that is not standard-issue norm — “normal,” air quotes — knows this feeling.
Where you’re around people, or there’s a conversation being had, and you’re not exactly sure on your safety. Like, could somebody do some physical harm to me? Could somebody want to be very aggressive with their wording and their engagement with me if they were to find out, um, that — that I’m different?
And, um, I — I yeah. That only has happened to me maybe three or four times since that graduation commencement speech. And it was interesting, because that pit in my stomach — that feeling — came again a couple weeks ago.
Um, when — I’m gonna look at my notes here real quickly — that you, um, the United States Secretary of Health and Human Services, Robert F. Kennedy, had a press conference where he was going over the Autism and Developmental Disabilities Monitoring Report — the ADDM.
If you didn’t know that existed, neither did I. But it does. Um, it’s a network report that is a surveillance system used by the Centers for Disease Control and Prevention — CDC — to monitor the prevalence of autism spectrum disorder (ASD) and other developmental disabilities in children. It provides data on the current status of ASD prevalence and trends over time, among other —
Other — he also stated other things, um, but this was the part, actually, that stuck out the most for me. And it came near the end of his speech — I watched the whole thing — and he said:
“I would urge everyone to consider the likelihood that autism — whether you call it an epidemic or tsunami or a surge of autism — is a real thing that we don’t understand, and it must be triggered or caused by environmental risks or environmental or risk factors.”
He goes on to say more. I really don’t even like that I’m quoting any of that. I’ve got the full quote in my article if you want to see. And I also have a link to the full conference if you want to see it — press conference and a transcript. So just total transparency — it’s all there.
He’s had a lot of other quotes during that that actually garnished a lot more, um, clickbait — were used to describe it. Um, I didn’t — those weren’t actually the ones that — that jumped out at me. A little bit, but not a ton.
Um, it was — it was the word “epidemic” and “tsunami,” actually, that for me I went, “Are you — wow.” That was actually challenging. Um, and to describe a disease — I’ve not — I don’t typically walk around and say, “Well, I have the disease of dyslexia and ADHD and autism.”
I — I just don’t typically describe myself as, um, having a terminal illness. That was another term that he used a couple of times. Um, it’s interesting. I’m not saying those aren’t appropriate terms — I just don’t identify with them.
So this is a conversation about labels, and projections, and other people’s language. And when the language is different — your interpretation of that language.
And so that’s what my article is about: how I — how I spent a week kind of processing that and thinking about that. And I truly, like a lot of people, had an emotional reaction to that — felt frustration, anger, fear, anxiety, sadness.
Um, curiosity a little bit for, you know, where this might go. Um, I — and then I kind of spent a week just wrapping my head around that, and — and feeling out the label that felt like it had been applied through that conference and through a lot of conversations that were coming at me, brought on by that press conference.
And one of the ways I dealt with that — I actually did a bunch of research, ’cause I was very curious why he was so — is so focused on autism and perceives it in the manner that he does, which I find kind of interesting.
Um, that too was well worth the deep dive and the four hours that I spent doing it. And I cannot tell you I found any answer, ’cause who knows? All I can say is I put together, um, kind of a history of things, and, um, it makes a lot of sense actually to me. And the people I’ve shared it with — they thought it made a lot of sense also.
And so what I’m saying — and what I really want to share with you — is just the fact that, um, I understand. And sometimes it happens. It still happens to me. Prominent business owner. I feel highly successful in what I do and what I bring to the world.
And yet, still — I can sometimes even get caught by a label. And it takes me a moment. And it — it took me seven days. Each day was a little different. I could tell I was just really trying to make sense of that conversation, and — and how it applied to me, and — and how I felt.
It’s been a long time since I’d felt like I was, um, possibly a little disgusting for not being neurotypical and — and not being like everybody else. And I didn’t like that at all.
And it was great. It was awesome when it switched. And really what it was, was I recognized that if I was feeling this — after years of the work I have done, with all the support systems I have in place, with everything — I could only imagine what people without that must be feeling right now. And parents — what they must be feeling.
And I thought, “Oh my goodness. I need to be a lighthouse for people.” All right?
And that just — that immensely got me feeling strong and confident again. I’m like, “I need to be a light. To continue to help people. To coach people. To bring people to the table for conversations, for learning, and for growing around these types of things.”
‘Cause that — I don’t want anybody feeling like that more than a few minutes. And anything past that is — is truly a bunch of time you cannot have back.
So this is just my reminder: in the end, those moments will come and they can go. You do not need to hold on to labels that other people project onto you — other people’s interpretations.
I strongly recommend you go exploring when that happens. That’s really what I went into — was an exploration mode — to be like, “What do I need to take from this moment and what I’m feeling right now? What has value in this?”
And what had value was — oh man — I got rerouted in my purpose, in my cause, in the fact I’m not an extreme activist, but I’m definitely an advocate. And — and I love what I do.
And it’s really important that when labels get applied — quite often, the focus is on the what’s not possible. And I so highly recommend that you take the time to figure out what is possible.
And — and don’t even use that as a limit. That’s just a starting point. I’m so grateful nobody limited me as a child with some of the things that I heard in that press conference.
‘Cause that — that could have been detrimental to the rest of my life and my success. So I want to make sure that that does not get projected forward.
I would be immensely curious, um, to hear about some of your reactions — but to also hear how you’ve dealt with times when people have applied labels to you, or you’ve maybe applied labels to yourself.
And as you’ve explored that and learned more and figured that out, I would love to hear some of your process.
So thanks for tuning in. Thanks for your time. Please follow. I would love for you to come back next week — or many weeks from now — and continue to learn more about your neurodifferent brain and all the ways it’s incredible.
I’m JoyGenea, International Neurodiversity Coach — and yes, I am a very different thinker. Thank you.