Jackson Skane explains how Northeast Arc helped him find acceptance and inclusion after an autism diagnosis.
This year, Northeast Arc is celebrating 70 years of changing lives and discovering abilities. And to celebrate that anniversary we are speaking to the agency’s early leaders who helped pave the way for the work we do.
Our organization was founded by people who challenged the status quo for people with disabilities and pushed for inclusion in all facets of life.
In this episode, you'll hear from Jackson Skane, a youth ambassador to our Board of Directors, a passionate Autism Advocate, and an important voice as we shape our organization’s future. Jackson will explain how Northeast Arc helped him find acceptance and inclusion, and how he wants to use his experiences to help other kids with unique abilities.
Hello, and welcome to All Things Disability, a podcast from Northeast Arc. I'm Jo Ann Simons, the president and CEO of Northeast Arc. This year, Northeast Arc is celebrating 70 years of changing lives and discovering abilities. And to celebrate that anniversary, we are speaking to agency leaders from across the decades who have helped move our work forward.
I really hope the children and adults who are going to be part of the Arc family are going to be able to learn to embrace their disabilities, not focus on it as a disability. Because for me back then, it was focused on as such like a negative thing when it really doesn't need to be. It's just a unique ability.
Today, my guest is Jackson Skane, a youth ambassador to our board of directors, a passionate autism advocate, and an important voice as we shape our organization's future. Jackson, it's so good to see you again.
It's so good to see you. Thank you so much for having me.
I'm really excited.
And we were just talking. You're a senior in high school now?
Yes, I am. I'm very excited to start the next part of my journey.
Yeah, and what do you think the next part of your journey might be?
Definitely going to a four-year college, either Quinnipiac or Endicott one in between right now and I want to major in special education.
That's remarkable. Well, we're going to get into your story and people are going to understand why that's such a remarkable choice for you. So Jackson, what's your first memory of being part of the Arc family?
Well, my first memory is definitely those adaptive music and dance classes because that is where I really started with the Arc. And I think that was so-- I just remember it being really like magical for me because compared to other kids my age, I stuck out a bit. So being in those adaptive classes, I could be around other kids who had similar abilities like I did. So that was a really great experience for me to have and it was just-- it really helped start my passion for dance and music, which I still love now. I'm a dancer. You know, I've been dancing for like 10 years now. And I do love to sing.
Tell me where you dance.
I dance at North Shore Dance Academy in Danvers.
That's wonderful. That's a big organization and big productions.
Yeah.
That's terrific. So we're celebrating Autism Acceptance Month. Can you share some thoughts on how you've seen autism awareness and acceptance change for you from when you were in elementary school to middle school, which I know is a tough time for everybody. And now as you prepare for college.
Yeah. So definitely back in elementary school, autism was not known to many people. I knew many people knew of what down syndrome was and dyslexia, but autism was something no one really knew about. And I myself didn't know until my parents told me at the age of 9, so in third grade. But because of that, I really wanted to tell people my story and tell people about autism because no one really knew what it was.
So in fifth grade, I actually spoke to my entire fifth grade class and told them about autism and what my story was behind it and my experience. And it really did open a lot of people's eyes up, and they were like, thank you so much for sharing your story, like I had no idea that autism even existed. So I think going into middle school after hearing that speech, a lot of kids learned to be a lot like kinder with their words and be more sensitive to some people being a little different than others.
And I think now that I'm going off to college, there's so much autism awareness. I see so many parents posting about it. It's around on social media, so many people really do know a lot about autism awareness. And I think along with autism awareness, people have been like including the message behind, including kindness with it too. So it really had such a difference since when I was in elementary school to now.
It's such a great message that you're saying and that we're hearing in terms of other young people or other families who might be listening to this podcast and imagining how their sons or daughters or their neurodiverse or atypical children are going to be accepted because you've actually found acceptance.
Yeah.
You know you're part of your community. And your community would be so much different if you weren't part of it. Well, we're at the Northeast Arc really grateful to you because your achievements and your ability to convey positive messages around autism awareness and acceptance. And very proud of your work with the Peter and Elizabeth Tower Foundation. And people may not be aware of it but you helped secure a grant for leadership training for young adults with diverse abilities to participate in training. And now you're in your second year as a community expert for the foundation. So do you want to tell the audience a little bit about what your work as a community expert for the Peter and Elizabeth Tower foundation means?
Yeah. So it's pretty much a team full of individuals who fit under their pillars of the organization on people who they're supporting. So it's people with intellectual, mental, and physical disabilities, people with mental health struggles, and also people who suffer with alcohol and drug abuse issues. So they take individuals who've had those experiences to be able to pick the nonprofit organizations to donate the grant money to. And these organizations create programs to support the individuals who might be struggling with some of those abilities that the people who are on the team get to choose which organization to go with.
So we create an RFP, that's one of the first things we do. So we usually pick what age group we're focused on. So last year, for example, we were focused on the transition ages of 13 to 18, so kind of middle school going into high school. And then also 18 to 26, so transitioning into adulthood. And it was honestly a great process. We got to do Zoom calls with the different nonprofit organizations and that was really helpful because we got to hear more of why they really want the grant money and how it's really going to benefit their programs that they need the funding for. And it was a great experience to be a part of, and I'm so lucky to be in my second year serving as a member.
People don't know that I'm almost speechless listening to you describe so articulately and with such clarity on your role in a foundation because it's a pretty complicated role that you have. And you just explain that in a way that I think everybody listening to it is going to understand that people with real lived experiences are actually the people who are going to be recommending funding for. And that's an extraordinary achievement by the foundation. And it's also extraordinary for you to have been recognized as one of the experts with lived experiences. And your experience with the Tower Foundation and your years of experience as an autism advocate impressed us so much that led us to recruit you to be our youth voice for the Board of Directors.
There's not many people-- I think you were 17 when we first asked you. Now at the ripe old age of 18, you are a voice to our board of directors and you're sitting among people who are, I don't know, at least two or three times years older than you. People in their 40s and 60s and maybe beyond. And how are you finding that experience?
I'm honestly really loving this experience. I mean, I think it's great to have a youth ambassador, an advocate who's gone to the Northeast Arc to be on the board. I really think I've learned a lot about the business side of nonprofit organizations that I definitely would not have known not being on a board of directors. I definitely love all the connections I've made with other directors and connections I want to continue making because that will really help. And I really hope for the future of the Northeast Arc. There are more young advocates like me who can come on the board because I think they really give a unique perspective of what they might want to see. And it is important, I think, to hear from the voices who are being supported at the Arc.
It's very important that we hear from people with lived experiences and you having-- not only you're living those experiences but you're able to articulate them in a way that makes it really helpful to our board as we deliberate some important decisions. And I hope that I'm going to see you in many more boards as you, I think, you're going to become somebody who people want to have because you have lived experiences, you're articulate, but you also learn from your opportunities. And that's really unique. When you just said something about you were really benefiting from the relationships that you're making with other people in the board and that you hope that they'll be useful in the future, you're 18 years old and you figured out something that took me years to figure out. We're going to be celebrating, believe it or not, our 70th anniversary at the Northeast Arc.
Exciting.
Yeah, well, a big gala. We'll make sure that you're not graduating from high school on that date. And we're going to begin a new planning, strategic planning process for our organization. What do you hope for in the future for the Northeast Arc? This is a tough question because I'm not sure even our seasoned board members are going to be able to answer that. But you might have a different lens. What do you hope for children and adults who are going to be coming part of the Arc family?
Yeah, I really hope the children and adults who are going to be part of the Arc family are going to be able to learn to embrace their disabilities. Not focus on it as a disability because for me back then, it was focused on as such like a negative thing when it really doesn't need to be. It's just a unique ability. So I really hope that these individuals coming into the Arc can be able to embrace their uniqueness and really showcase their specialties and their different abilities that are unique from other people.
And I also really hope that there are more youth advocate leaders like me because we really do need to hear more voices, whether they want to advocate in the community or at the legislative level. I think having more advocates who have had lived experiences coming out of the Northeast Arc would be really powerful and impactful.
You are mature way beyond your years. I don't know if that's-- I'm going to say part of it is the uniqueness of who you are. You're just an extraordinarily gifted. And you know, it's funny because we don't usually use the word gifted when we talk about a person with a disability but you are gifted in so many ways. In your way to communicate, in the way that you express joy. But I also want to think that maybe part of your ability to have been embraced your neurodiversity so easily maybe had to do with that you have a really exceptional family, too.
Yes. My gosh, yes.
Let's take a moment because I've met your parents and your sister and let's talk about them for a while because families really are so critical in this what we do.
I think a huge part-- I think my family is so loving and supportive of me and I don't even think I'd really be where I'm at if it wasn't for them. Back going into elementary school, they wanted to, the preschool I went to they wanted to keep me in the special education classroom but my parents knew that because I would mimic the behaviors of other kids, I needed to be in a regular class. So I would mimic the right behaviors and my parents really did have to fight for my education and really advocate for me. So I do really appreciate that.
And my sister has been by my side. She's been so loving and supportive of me. The day I called her when I told her like I found out I had autism, I was sobbing because I was like, my gosh, like my life's over. And she was just like I'm so happy for you, like you're amazing, like it was just so emotional for me because I wasn't expecting that reaction. So I think being in the family I am in, I'm very lucky and they've really done so much for me and I would not be in the place I am today if it wasn't for their love and support.
That's wonderful to hear. And speaking of your sister, I heard that this week your sister and you are doing some presentations to some elementary schools.
Yes. So we are going to two elementary schools in Danvers and then one in Peabody. So we're going to talk about Autism Awareness Month, my experience of autism and what helped me. And then also, I wanted to bring my sister Taylor along so she can give the perspective of being a sibling with someone with a disability in general or a friend and how you can be a supportive person for them. Because I think having that perspective too is really important. You need to hear from the outside perspective and not just from the person with a disability. So I'm really excited for that.
Well, I know we have some people that are going to come watch you. I'm sure see a tape. So tell me about Taylor. How old-- is she older or younger than you?
She's younger than me. She's 16. She's a junior at Essex tech like me, and she's in the culinary arts program.
Excellent. So you are quite a team there and we've talked a little bit about your future. But let's now go back to where we started that you're interested in special education. So by now, our listeners understand maybe what drove you to this interest. But if you want to tell us a little more.
Well, I think about around middle school I really was interested in teaching Spanish, I think. I think in middle school, it's such a weird place for so many people. And I noticed how many students needed support. And I had this one English teacher in seventh grade named Miss Randall and she really inspired me to be a teacher in general. And I think through my experience of having special education services, I've seen what works and what doesn't work or how some kids might like certain things or some might not because some people might think everyone needs the same thing but it is different. So that really did drive me into wanting to be in the special education area.
So after I graduate from college with that degree, I want to be a special education teacher in an elementary school for like four to five years. And then after that I'd actually love to be a director of special education in a whole school district. And I'd really like to be behind that process of choosing the services and being able to help kids on what they need or what works for them, and then I would also love to keep doing what I'm doing being an autism advocate because I really do love doing that. And I think it really has inspired so many people that I've talked to. So that's what my future looks like.
I don't usually get chills, but I definitely get chills listening to you. And I want to shout out to any school superintendent who's listening that, watch out because in 10 years, there's a special-education teacher that's going to be knocking on your door looking to become the special-ed director. And he deserves a second and a third look.
Thank you.
Jackson, I have no doubt you are going to be continuing to not only impress me but continuing to impress and those-- that early door that your mother and father knocked open to get you into kindergarten, you're just going to plow through every door if anybody dares to put one in front of you. And I appreciate and thank you so much for joining us today. And we're grateful for your ongoing service and we're not going to be giving you up soon and both those colleges are local enough for you to participate. We also want to thank Peabody TV for providing our wonderful recording space. And All Things Disability is made possible through the financial support of the changing lives fund which was created through a gift from Stephen Rosenthal. To learn more about the Northeast Arc and to find past episodes of this podcast, please visit any-arc.org.
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