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Jan Nisbet - A Disability Activist from Academia
By: Source Material

In the early 1980s, many remarkable people were having personal experiences which would combine, and reach a positive critical mass in New Hampshire. These people were destined to meet, play unique roles, and through their combined talents change the fate of people with developmental disabilities in New Hampshire - forever. From deep within the state’s bureaucracy came Donald Shumway, from the state of North Dakota came Janet Krumm, from the south came Dick LePore and yet there was something missing.

Only Jan Nisbet was needed and missing.

During this time Jan was processing a new career which was inspired by an intense experience. As a young student, she one day found herself playing softball on a pick up team. She noticed that a man with disabilities was not in the game. She wondered why.

That experience was a life changer for the young Jan Nisbet. It was also a life changer for people with disabilities in New Hampshire and nationwide.

In the mid-80’s Jan Nisbet applied for a position at the University of New Hampshire, and joined this gathering mass of titans. It would set a foundation for her to play her gigantic part in changing the futures of people with disabilities in New Hampshire starting in 1987.

At that time, the state was faced with a crisis about the services it was providing for people with disabilities. The state threw out a challenge to the University of New Hampshire. Could UNH establish a center that would be a source of innovation in the field of disability, a model for the best practices and an advocate for change? The state got what it wanted, and then some. By hiring Dr. Jan Nisbet in 1987, then a professor of rehabilitation and disability policy at Syracuse University, UNH has become—and the state as well—a leader in the field of services to people with disabilities.

Jan started her work with a budget of $120,000 and a staff of three. During her tenure, Nisbet has helped UNH’s Institute on Disability grow to a staff of 42 full- and part-time employees, paid for by 24 grants and $4.3 million in external funding. But Jan’s numerous accomplishments for NH were not limited to her University of New Hampshire pastures alone.

In 1987, Jan immediately and positively reached outside of her UNH role, and included external organizations and individuals committed to change for people with disabilities in a positive direction.

Among Jan’s earliest convictions, was that an organization had to exist to provide a public voice, a central focus to the disability movement. That is when Jan Nisbet reached out, asked for a meeting, and met Janet Krumm. Janet at that time was a young mother looking to start a newspaper which would provide a central identity and repository for disability news in NH from a family perspective. Jan and Janet quickly recognized each other’s role, and worked to complement each other’s efforts for the next twenty two years. In the early years of The Challenge, Jan arranged for Janet to have copiers, printers and other high cost items needed in the newspaper industry at the time at no cost. Later, Jan would arrange a long term sustainment from the Institute on Disability (IOD) which continues to this day.

Jan also recognized in Donald Shumway and Dick LePore the "inside men" necessary to carry on change from inside the bureaucracy which served citizens with disabilities in NH. Jan reached out, and made sure the IOD’s efforts kept with the integrity of her strong positions, but complimented whenever possible the mutual agenda of including and improving the experience of people with disabilities in the community. Don and Dick always made sure there was a door open, and communication occurred regularly with the IOD to strengthen the movement which was underway.

During her tenure, Jan played important parts in supporting Don and Dick’s accomplishments to include the closing of The Laconia State School, and a strengthening of the community based services which took that institutions place.

The Institute on Disability’s projects now spans an immense spectrum, from autism to inclusive education, from community living for adults to technology, from health care and public policy to leadership training. Under Jan’s guidance, the institute has set as its vision a world where all people, including those living with disabilities, are fully engaged members of their communities, and where support is available to help individuals and families achieve independence, productivity and a satisfying quality of life.

Nisbet began her studies at Simmons College, where she earned a bachelor’s degree in physical therapy. She went on to a master’s degree in special education and mental retardation and a doctorate in the education of severely handicapped students, both from the University of Wisconsin-Madison. Over the past 24 years, she has been conducting research and writing on topics related to deinstitutionalization, school restructuring and reform, transition from school to adult life, supported employment, inclusiveness for adults, community services and supports, Medicaid reform, and issues related to aging and disability.

Jan is a past president of the executive board of directors of the Association for Persons with Severe Handicaps, an international organization focused on improving the lives of persons with disabilities and their families through research, training, and advocacy. She chairs the program committee for the national Association for University Centers on Disability and is a founding member the board of directors for the Endowment for Health, New Hampshire’s Health Care Conversion Foundation. She has published extensively in the field of significant disabilities, serves on numerous editorial and advisory boards, and presents papers nationally and internationally. She is the principal investigator on many state and nationally funded projects related to the community integration of people with disabilities and continues to contribute to public policy reform efforts in New Hampshire and nationally to help people with disabilities to fully participate in their communities.

She has received the UNH Alumni Affairs Award for Excellence in Public Service, the Presidents Award from the National Down Syndrome Congress and the UNH Research Excellence Award.

Jan as hurled a very large rock into the pond which is New Hampshire. Among the saddest things are success stories she made possible, which she may never know about. They happen every day in this state now, because of the waves resulting from her throwing the rock into New Hampshire’s pond.

One such story, unknown to Jan, involves my own son Joseph. Long before Janet’s sickness, we both internalized Jan’s admonition about how to plan for Joe’s transition into adult life from High School. Jan stated a simple concept: "the day after Joe turns twenty one should look no different from the day before to Joe." With that concept deeply imbedded into our minds, Janet and I began a "three year transition IEP." At the time this was unheard of in the Dover School District, but we insisted the IEP written for Joe at age 16 take in long term, strategic issues for Joe. We designed a program which slowly cut back on in school classroom time, and replaced it with real work and a job. I understand such "transition IEP’s" are easily secured today. Back then, it was a fight.

And true to the goal, the day after Joe turned twenty one; he got up, took his shower, fixed his breakfast and reported to work as he had done the day before.

Jan never knew. I know from other parents that this kind of experience is becoming more frequent, it is being duplicated across the state and now the nation. I hope Jan is able to internalize this goodness made possible by her fierce spirit, and dogged determination. I hope she realizes each and every day, her now imbedded concepts make such stories happen daily.

Another true accomplishment made possible for my son Joseph because of Jan involves his choice to remove himself from the job he secured during transition. Joe worked for Healthy Universal Beginnings (the HUB) in Dover. He delighted in his job under progressive leadership. However he wanted to use more sophisticated equipment, like a buffer and a stripping machine. A change in leadership at the HUB occurred, and forbade Joe’s wish to progress in his job.

After Janet passed away, Joe and I were having supper with his sister Mary. Joe let us both know he was now unhappy with his job, that he felt boxed in. He clearly made known he wanted to quit and find another job.

Because of Jan Nisbet’s admonition that people with disabilities have EVERY RIGHT as anyone else, both Mary and I did not encourage Joe to stay at the HUB. "How normal" was my initial thought, "Joe wants to grow and is taking positive action to make sure he does grow." The next day, Joe handed in his two week notice, a "normal" thing to do.

Joe has since secured employment and activities which delight him, and he is growing again as he wishes to. He is working around more sophisticated equipment and teaching "normal" people how to run machines they never fully grasped. Jan never knew this.

Perhaps among my favorite thoughts of Jan is something very personal to me. Jan took time from her very busy duties, and was home between some international travels. She made the time to be among the first to welcome Janet Krumm home after extensive surgery for cancer. It was a late spring day, and I was home when Jan came by. Janet had asked me to set up the back yard tables and chairs, so Jan and she could enjoy a delightful day and some light lunch I had made up.

It was so good to see the life that Jan’s visit gave to Janet that day, and I know they spoke about the future of people with disabilities in New Hampshire – because Janet later told me as such. There were smiles, and laughs, and some knee slapping as past exploits were re-lived and enjoyed. I should have caught a picture of them, but I did not want to intrude.

In that spirit, I will share this photograph of a piece of small knick-knack which I will send to Jan as congratulation from the New Hampshire Challenge Incorporated as she moves on to her new duties. I am sure looking at it, Jan will remember that special afternoon.

One of Nisbet’s favorite quotes, which she displays prominently at the institute, is from Jonas Salk: "There is hope in dreams, imagination, and in the courage of those who wish to make those dreams a reality."

Jan Nisbet has already made a positive reality possible for people with disabilities in New Hampshire, and we wish her the best in her new role overseeing research at UNH.