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Celebrating ADA: An Interview with Jonah Selber and Judy Creed

Repost from D5 Coalition.org

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Jonah Selber, who was born with a developmental disability, is an 18-year employee of Thomas Jefferson University Hospital in Philadelphia and a board member at a private foundation established by his stepfather, Robert Schwartz, who invited Jonah and his siblings to join the foundation’s board four years ago. As a board member, Jonah is responsible for identifying and recommending grants each year. His grants directed to Thomas Jefferson University Hospital and Adults with Developmental Disabilities (ADD) have garnered widespread attention and praise.

Jonah moved into his own apartment 18 years ago and recently moved again, where he and his mother, Judy Creed, a long-time advocate and organizer, sat down with Meghan McVety of D5 to talk about their experiences. They offer insights about how foundations can advance inclusion – and a powerful example of the impact that came from having a person with a developmental disability in a decision-making and leadership role at a foundation. The interview has been lightly edited and condensed for clarity.

You’re obviously a role model for people—people look up to you. How does that feel?

Jonah: It feels good, but it feels very weird and strange because when my stepdad approached me [about the foundation] I never realized I would get all this interview attention. I guess people were interested about who I was and how did I come about this money to give to my organizations, and I guess people wanted to know about my life. My stepdad said you have charities that you can choose to support yourself, and he asked me to be on the board of directors. I chose to give where I work and one of my organizations that is a social network, ADD, and I give money to them every year.

Judy: We as parents wanted our children to look into themselves and see what they care about, and to have the opportunity to help whatever it is they care about.

Jonah: I knew right away where to give the money.

Why did you choose those two organizations?

Jonah: Because they needed more help. Jefferson needed a lot of money to help it through changes and mergers. It was successful but needed help. ADD needed it, too, because a lot of people, “my people”, didn’t have enough money for the activities so it was very special and honorable to do that. It was gratifying to me.

If you had to make a guess, Jonah, what has your family, what have the other board members, learned from you?

Jonah: I think they learned respect, but I think they’re very proud of me and they’ve learned that I can be like them, and do what I can – like they can for their organizations.

Judy: What surprised me, and Jonah is always surprising me, is that he knew before anybody else exactly where the money was going to go. He knew where to target the money, and he was right about them. People don’t see people with disabilities as having abilities. I think that Jonah is shining a light on the fact that he has abilities – he goes to work and they love him and he’s valuable – and he can give back to society. A lot of people who can give back to society don’t, but that’s a value in our family. Jonah has a very helpful heart. It’s his nature to help people, and it makes him feel good to make things better for people. He’s really a compassionate person.

Jonah: Yes, I am.

You’ve said it’s gratifying, Jonah, what makes it gratifying?

Jonah: Being inspired and being appreciated every day, knowing that I’m helping people, my own kind. And it’s good.

For people who give away money, for people who have or work at foundations, what do you think they can learn from how your family has run its foundation?

Judy: It is very special. Everyone’s so used to leaving Jonah out of things, and my husband didn’t leave Jonah out of the foundation, and Jonah stepped up to the plate. That’s the thing – we underestimate people with disabilities. Give them the opportunity and they step right up to the plate.

Jonah: Yes, up to the plate.

Judy: One of the things foundations can do, in my opinion, is to not give grants to organizations unless the organization has a written commitment to hiring people with disabilities. Let it be a value of the organization. Whether or not they find somebody to hire who is appropriate is not the issue. The issue is that the organization has a requirement for itself that they value diversity in their own organization. So if I have a million dollars to give, I can say to a nonprofit, I want you to have written in your brochure or employment requirements that it’s a value of yours to hire people with disabilities. And we’re going to keep an eye on it to see if they do it.

Jonah: Right, because the choice is theirs, really.

Judy: If the organizations did it themselves, required inclusion, and if the philanthropists required inclusion in charities, that would go a long way. That’s a real concrete thing – inclusion.

Jonah: Yes, inclusion. It wasn’t easy. I knew I was different, but I didn’t want to be. And that was hard for me to accept. It got a little easier from all my trying. I believed in something else inside me and I knew I could persevere. I don’t know where or how I got the strength. I trusted it and I hoped and I persevered.

You’ve been a positive example for your family and those around you. You’re an example of what could be.

Jonah: If others want to be, that’s the question. Every person with disabilities wants to be validated. I show how we can do that. This is what can happen if you’re inclusive.

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