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Joan I Nielsen, Founder of ILCNSCA | June 20, 1931-October 2, 2010

Joan Nielsen

Today I am honored to say a few words about Joan Nielsen, my friend and supporter. Joan Nielsen and Gil Adrien with a handful of others started in 1978 the North Shore Self Help group, an advocacy and social networking grass roots organization for those living with physical disabilities. This was in a time of the initial development of the disability rights and independent living movement nationally. She, with others, also started the North Shore Transit, a precursor to the current Para-transit services, The Ride, in 1982. Although she had Guillain-Barré disease, which affected Joan's mobility and other systems, she was a fierce advocate for independent living. She and Gil wanted to follow through on getting services for the North Shore and Cape Ann. She and Gil along with others worked with Charlie Carr, Northeast Independent Living Program Director, and currently the Commissioner for the Massachusetts Rehabilitation Commission, to forge the ILC of the North Shore, which took on some of the service areas of the NILP and Boston Center for Independent Living. This was achieved with the ILCNSCA incorporation in 1987.

She understood very deeply the premise of the independent living centers, nothing about us without us, and that we, those of us living with disabilities, must be the leaders and peers for our independence and civil rights. She was a strong role model for living fully and independently. Millie Becker says of Joan, she was my mentor. Joan Adrien says, she was a true friend to me and Gil. Margo Bane, another founding member of the Center, says, she taught me about independent living.

Paul Lanzikos, Executive Director of North Shore Elder Services sent me this message yesterday:

Mary Margaret, On behalf of the Board of Directors, Staff, and Volunteers at North Shore Elder Services, I extend our heartfelt sympathies on the death of someone who was so important to the Independent Living Center of the North Shore and Cape Ann. May she rest in peace, Paul

I share with you memories of Joan from Shawn McDuff, Deputy Director of the Center -

Joan Nielsen at the NSSHG 2002 Legislative Breakfast

Joan was the Founder of our agency as well as first peer counselor. The original ILCNS began with the Executive Director Adele Smith, Joan, and a secretary. I volunteered and was a program participant in the summer of 1988. We had many fun social activities as well as peer groups that Joan organized and facilitated. Back then, the center's group activities seemed to mesh with activities of the North Shore Self Help group; this was the way the agency built the original consumer base. She was a great organizer and a person with whom you would want to be associated. She was a warm, kind, caring and humorous individual.

Joan was a person with a disability living with Guillain-Barré syndrome. She was a strong advocate working on accessibility issues back when there were no particular accessibility guidelines. Though she was generally soft-spoken, Joan was never afraid to speak up when it would make a difference. She advocated for handicap parking everywhere as well as getting electric scooters at the supermarkets.

Some other friends of hers who have passed away connected with the agency or the self-help group since the early days: Gil Adrien, Bernice Leavitt, Ed Lipman, Carol Stone, Nancy Morley, Margie Muessel. Joan and these advocates were a powerful force.

For myself, a woman living with mobility disability from my teens, I was delighted to meet Joan when I became Executive Director of ILCNSCA in September, 1998. She along with Gil Adrien and others who were members of North Shore Self Help Group, immediately contacted me and gave me their support to reorganize the ILCNSCA. Her humor and warmth made my transition as the new Executive Director smoother.

In 2001 the North Shore Self Help Group gave the Center $1000, to start the Restaurant Accessibility Survey Project, whereby trained volunteers visited North Shore and Cape Ann restaurants to determine accessibility. This program has published its results during its early years in a booklet and now on our web page for use by the community at large in deciding where to dine. Today we are expanding this project to include retail, office and all types of entertainment businesses. This is a great advocacy and education tool for increasing Community Accessibility, and a direct result of the inspiration to the Center from Joan.

Joan Nielsen at the NSSHG Legislative Breakfast 1990s

Joan and Gil Adrien along with then Board President Sheila Casey and myself are in a photo, taken at our 2002 Legislative Breakfast, where the North Shore Self Help Group, under the direction of Joan, with support from Gil Adrien and the other key members, gave a donation to the Center of $15,000.00. I gave a copy of that photo to Ken last evening of the signing of that fund over to ILCNSCA. With this donation to the Center, we started the North Shore Self Help Group Fund, which assists our customers who have a mobility disability to obtain transportation to a job interview or a new job, or buys them a business outfit for those interviews, and is used to assist those who are leaving nursing homes to set up their home in the community. This fund has helped a number of men and women over the past 8 years. These funds also have allowed the Center to begin to develop a cash flow cushion to offset the changing and fluctuating course of funding over the past eight years.

The Independent Living Center of the North Shore and Cape Ann will be adding to our web page that photo, as we announce the Joan Adrien Memorial fund, accepting donations for youth with disabilities to obtain employment. In addition, the Center has renamed its Youth Leadership award to the Joan I Nielsen Youth Leadership Award. Joan always spoke of the need for assisting our youth with disabilities, as well as how proud she was of her own children and grandchildren.

Lastly, to you Ken, always at Joan's side at our luncheons for Chinese buffet or meetings at the Center, please know that we will miss Joan's laughter, energy, and advocacy, yet those qualities and memories will continue to be reflected at the ILCNSCA in our efforts to achieve Joan's dream of full accessibility and independence for all who are living with disabilities.

Jim Kruidenier, Executive Director of Stavros, the independent living center for Western MA, located in Amherst, sent me the following email yesterday: Hi, Mary Margaret -

I'm sorry to get this news - ILCNSCA has always been a special place, and I know all of you will keep up Joan's work.

Joan, we will miss you and thank you for your mentoring of all of us in independent living.

Mary Margaret Moore, Executive Director
ILCNSCA
October 6, 2010

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