By: Kelly Rouba

Now that he is Chairman of the National Council on Disability (NCD), it’s rather ironic to think that, at one time, Jonathan Young couldn’t bear the fact he had a disability.
“On a personal side, disability to me was always the enemy,” said Young, who broke his neck during a wrestling match his senior year in high school in 1986. After suffering the spinal cord injury, Young was reliant upon a wheelchair to get around and he soon realized just how much his life was going to change.

However, having been a stellar athlete, Young was determined to recover as much as possible from the injury. At that time, “not to use a wheelchair was very much a driving goal,” he said.

In high school, “I was a wrestler who finished third in my state my junior year. In my division and class, I was first in the state my senior year. I didn’t really care much about schoolwork. I was just very much…a jock/athlete,” Young said.

“All of a sudden, even though I had substantial recovery where I was able to walk albeit with functional limitations, very much my physical prowess was…striped away and, to me, I very much wanted to pass for normal as much as I could (and) to get back as much strength as I could.”

Young also had significant educational goals. After high school, he attended Messiah College and then went on to pursue his master’s degree and eventually his doctorate’s degree. But, “ten years post my injury, I think it sort of caught up with me,” he said, noting, “In 1996, I actually went through a really difficult period of depression.”

As a result, Young began thinking about leaving school. “I was looking to drop out of my Ph.D program and maybe just work at a bookstore or something—do something to decompress, take a break, recalibrate, and kind of figure out what I was doing.”

Overall, “I just was not really quite sure where to go or how to proceed and life was really feeling quite aimless. All of a sudden (I had) my injury catch up with me in a way that I hadn’t really processed before. My father teases me about it now, but at the time, I had no idea what I was going to do in the future. I just felt very directionless and very much doubting what I’d be able to do.”

However, it wasn’t long before Young’s life and attitude would dramatically change once again as a result of meeting Gerben DeJong, the Director of the Research Center at the National Rehabilitation Hospital in Washington, DC. “He approached me with an opportunity to work on…contract with NCD (by) writing a history of the Americans with Disabilities Act,” Young recalls.

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Even though he still felt stressed, Young agreed to take on the seven-month project. “I recognized it was a great opportunity,” he said, adding, “I went ahead in doing the project. In retrospect, it was one of the best decisions I’ve ever made, dramatic as it was at the time, because that was really my path to personally identify with disability. It also then laid the groundwork for what I’ve done professionally.”

As part of the project, Young was able to interview many prominent disability advocates, from Justin Dart to Lex Frieden to Becky Ogle. “I was just frankly blown away with what they’d accomplished,” he said.

Aside from hearing numerous personal stories centered on disability, Young also learned about the Americans with Disabilities Act and the Civil Rights framework to disability. “It just radically transformed my perspective on disability. Instead of it being kind of a debilitating, stigmatizing, negative thing, all of a sudden, I was really in awe of what people had done. And…through that process, I re-thought my own personal identity with a disability.”

Young will also never forget the impact that attending a conference hosted by the Society for Disability Studies (SDS) in 1997 had on him. “For so much time, I had tried to pass for normal as best I could and there was this liberating experience of limping around the SDS conference as it were, where…I didn’t have to hide my gait.”

Another experience soon reinforced the fact that he didn’t need to be embarrassed of his disability. According to Young he had decided to once again pursue his doctorate’s and it was March of 1998 when he got to interview Bob Kafka for his dissertation on the history of the ADA and the disability rights movement in the context of other civil rights movements.

“I learned, at the time, he was like me—an incomplete quad, meaning a person with a spinal cord injury, but it wasn’t a complete injury.”

When they met, Young saw Kafka was using a wheelchair and asked him why since he had heard Kafka was able to walk. “He said to me very starkly, ‘Jonathan, the objective is to get from Point A to Point B. If you’re exhausting yourself in the process, what’s the point in that?’ So I went back and pulled my wheelchair out of the attic and had another liberating experience of instead of always struggling to keep up with people, I was blazing past people, cruising along in my wheelchair. So I started using a wheelchair—not all the time—but sort of for distances,” Young said, adding, “For me, using the wheelchair was part of my embracing the disability.”

While continuing to work on his dissertation, Young received a called from Justin Dart, who said he’d like to nominate him for a disability-related position at The White House, if he’d be interested. Although Young wasn’t quite sure what the job entailed, he sensed it would be a great opportunity. “I called Justin back about five minutes later and said, ‘Yes.’”

For Young, working in the Office of the Public Liaison at The White House was a phenomenal experience. “The White House was really my first experience working in an…advocacy role—not writing about what other people did, but being part of the trenches, if you will, working on disability issues.”

According to Young, he had to deal with every type of disability and disability-related issue, from transportation to Medicaid, while working there. “Obviously, that’s a whole lot for any one human being to try to be responsible for,” he said. As a result, he started viewing himself as a “matchmaker” and began connecting people working on policy issues in The White House with the advocates dealing with those issues in the community, and he also tried to make sure progress was made by helping move things forward.

Young feels that serving as chairman of NCD mirrors his experience at The White House in that the Council is also responsible for every disability and disability-related issue. “I very much bring that experience at The White House to the way I’ve been pushing things at the NCD,” he said, noting however that they realize they can’t tackle every issue that comes along.

Instead, NCD is trying to determine “where can we identify some priority things (in areas) where things are moving where we can make a difference (and) where NCD doesn’t need to be the owner of all the brainpower, but we can try to get the right folks in the room together to play a facilitating and convening role so that, overall, an agenda can move forward.”

Since Young took over as chairman, considerable change has taken place and he feels like NCD has reached a milestone in shifting their focus. At first, the goal was “making sure the agency was functioning well and was organized well and had the underlying infrastructure to support the work that we want to do as opposed to jumping in and focusing only on putting out fires…(when) we never really built the organization we needed to (in order) to have an effective federal agency long-term.”

The process hasn’t been easy though. “This last year, so much work was required to get NCD operating as a credible, reliable, federal agency,” Young said, adding, “We went through a strategic planning process and we’ve reorganized the staff structure.”

In terms of staffing, there are now three directors beneath the executive director. “One is a Director of Operations and Administration. The other two are really the core substantive focuses of the agency now, which is policy on the one hand and engagement on the other.” NCD also reworked its IT infrastructure and redesigned its website.

Moreover, Young said that in the past, NCD focused mostly on developing policies and writing reports. Going forward, “I want to have very much an outwardly engagement side, which is in a miniscule fashion trying to look at the approach of the outreach offices at The White House.” In essence, Young wants to have NCD look to partner more with other agencies and develop relationships with political leaders, the media, and disability advocates.

In a recent speech, Young acknowledged that these are difficult economic times for everyone, especially people with disabilities. He said that NCD must rise to meet these challenges and engage with stakeholders from the disability community as well as identify opportunities to influence policy issues. Plans are also underway for their first hearing to ensure people with disabilities are part of the national budget debates.

In that same vein, NCD plans to build upon the momentum that resulted from the 2010 Disability Policy Summit, in part, by hosting regional forums around their new theme: Living, Learning, and Earning. This phrase, Young says, is relatable to every American and NCD is looking for ways to help people with disabilities with each of those elements.

“I think sometimes we fall in the traps of preaching to the choir about assistive technology or disability specific things, but ultimately we’re talking about very basic American aspirations,” Young said.

In his speech, Young also stated that extensive coordination is needed to help people with disabilities live, learn, and earn. He added that “a job opportunity…is a real opportunity only if one has appropriate, accessible, and affordable transportation, housing, technology, health care, and other services and supports. Each forum will be an opportunity to learn more about how federal disability policies play out – or fail to play out – in the lives of real people.”

Young hopes the forums will help keep NCD informed of issues within the disability community so that they can, in turn, advise the President and make disability policy recommendations.

NCD has also been focusing on health care reform and the Affordable Care Act. “(It) is happening now and it’s happening fast,” Young said. “So, we’re developing a public/private working group of advocates in the community as well as NCD staff and members to try to be monitoring and tracking what’s going on, and we’ve been meeting actively with people at HHS and other places to try to be directly involved (and) making sure that disability is not left behind in the implementation of that law.”

Although the National Council on Disability will continue to tackle these issues and others that arise, Young has pointed out that it is a tiny federal agency with an oversized mission. Yet, he will remain dedicated to fulfilling its mission to help “guarantee equal opportunity for all individuals with disabilities” and to “empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society.”