From the Editor’s desk:
As many of you may already know Elmer C. Bartels Commissioner of the Massachusetts Rehabilitation Commission from 1977-2007, died on July 5, 2014. Commissioner Bartels was a champion for independence, employment and self-advocacy. His work continues in the dedication of the MRC and the collective experience shared from generations before who act as the guardians to the future we all strive to meet. Commissioner Bartels’ obituary is included in this edition. It was beautifully written by his daughter and gives insight to Commissioner Bartels’ life and work.
The Youth Leadership Forum came together for a week of discussion about advocacy, education and employment at Bridgewater State University. Youth, as leaders in their community, were of particular interest to Commissioner Bartels. MaryEllen MacRae shares her experience detailing the week of advocacy and empowerment.
Also in this issue, Girard Plante has written an article about the struggles of Kitty Kemp, a woman who as a child, was placed at the Wrentham State School. Kitty describes her best success came when the MRC became involved. Kitty had a difficult road to get to a place of independence, living independently in a community of choice has long been supported by the Massachusetts Rehabilitation Commission (MRC).
Elmer C. Bartels
Commissioner, the Massachusetts Rehabilitation Commission 1977-2007
On July 5, 2014, I lost my dad, Elmer C. Bartels, less than a month after his 76th birthday and 54 years after he was injured in a hockey accident that resulted in a life changing spinal cord injury. Being paralyzed from the upper chest down for so long did not make him a hero and he did not identify himself through his disability. He was a man who was faced with a challenge, and with the highest level of focus and exuberance, he figured out how to live life to the fullest while simultaneously helping others in the same boat. That’s what made him a hero.
The third of four children, my dad was born on June 10, 1938 to Elmer and Dorothy Bartels. He was a happy, carefree kid and his youth was filled with wonderful, simple things like playing with his Lionel train set assembled on top of the ping pong table in his basement, hanging out with friends, identifying birds or enjoying family activities with his sisters, Jane Lee, Patsy and Dorothy, and setting up a camp site in the lot next to his home in the Oak Hill section of Newton, MA.
When Elmer was 12, he spent the first of 10 summers at Camp Agawam, a boy’s camp in Raymond, Maine. He loved everything about Agawam – the traditions, the focus on leadership and goal-setting, the activities and lifelong friendships. Sixty-four years later he remained involved with Agawam, serving as a life board member, visiting the campus as often as possible, and donating fishing rods, camping supplies, and tools for the wood shop. “Bartels Hut” offers nature instruction to campers, and there is a campership program established in his name. There is no doubt that Agawam was a huge influence on Elmer’s life.
After high school, Elmer went to Hebron Academy in Maine to sharpen his academic skills, and then attended Colby College in Waterville to study physics. There, Elmer became a fraternity brother with Sigma Theta Psi and met some of his closest friends. He succeeded academically, took on extra projects with his physics professor, and had a great time. The combination of Colby College during the school year and Camp Agawam as a counselor in the summer was perfect, and he told me years later that he felt at that time as though he had the world by the tail.
On December 5, 1960, Elmer’s life changed forever. During a fraternity pick-up hockey game at Colby, he tripped on the ice and slammed head first into the backboards, instantly severing his spinal cord at the C4/5 level. That meant he’d be a quadriplegic – paralyzed with very limited use of his upper arms and unable to walk – for the rest of his life. He was 22. In 1960, things were much different than they are today for people with disabilities and certainly there was no real encouragement or prospects for an independent life.
Fortunately, in June, 1961, Elmer met the woman who would become his wife, and my mom, his nurse Mary Foster while at the Lemuel Shattuck Hospital in Jamaica Plain. He was attracted to her dark, sparkling eyes and can-do attitude. Meeting her gave him confidence that he could indeed live a meaningful life, so they decided to figure things out along the way together.
Elmer and Mary were married the day after he was discharged from the Shattuck, and two days later they went back to Colby College to redo his senior year and graduate. After I was born in 1962, my father attended Tufts University where he earned his graduate degree in physics and then got his first professional job as a scientific computer programmer at the MIT Lab for Nuclear Science. In order to work, Elmer needed some ingenuity, like an electric typewriter (new at the time), using inverted pencils in his wrist splints so he could type, a table instead of a desk, and elevated computer equipment. With the new job came a new home in Bedford, MA, where my parents were actively involved in the community.
In 1968, Dad started to work for Honeywell Information Systems, first in Waltham, then in Billerica, MA., starting as a programmer, then as department head and systems analyst. My mom would drive him to work every day and go back to pick him up, and while there Dad would use his early computer skills to develop software and lead a department of 35 software engineers.
During the time he was figuring out marriage, parenthood and his career, Elmer helped to establish the Massachusetts Association of Paraplegics (MAP) with a group of friends who were motivated to fight for things like accessible public buildings and equal employment. MAP was the start of his advocacy efforts and he got a real boot out of how effective they were as a group. He was involved in many organizations such as Easter Seals and the Boston Center for Independent Living and others too numerous to mention.
In 1972, our family grew with the arrival of my brother Jimmy, and the four of us were really just a typical family, living the kind of life my father enjoyed as a child. I can honestly say that Jimmy and I never saw our father’s disability. He supported our interests, went to our games, helped with homework, took us on family vacations, and always had time for us when we needed him.
Elmer’s advocacy work grew and, in addition to MAP meetings we traveled to attend conventions, planned major events, and saw some real change in the effort that played a role in the passage of the Rehabilitation Act of 1973 and eventually the Americans with Disabilities Act of 1990. When Governor Michael S. Dukakis was seeking a commissioner for the Massachusetts Rehabilitation Commission, my father’s name came up, and in 1977 he took a leave of absence from Honeywell and was appointed Commissioner, only the second state director in the country who had a disability. That two year commitment became a 30 year role as commissioner and state director of rehabilitation – a job my father loved every single day. He served under Governors Michael Dukakis, Edward King, William Weld, Paul Cellucci, Jane Swift, Mitt Romney and Deval Patrick. In this role he was instrumental in helping tens of thousands of people with disabilities to go to work. He helped establish the personal care attendant program and was involved in ensuring assistive technology was developed and made available to people with disabilities so they could be successful in their jobs. These accomplishments were fueled by his glass-is-half-full attitude, an unmatchable optimism and enthusiastic view of life. “Get on with it” he would always say when faced with a personal, political, career or advocacy challenge.
He was honored for his work in many ways including receiving four honorary doctorate degrees from Colby College, Tufts University, Merrimack College and Boston University.
One of his greatest joys was the birth of his granddaughter, my daughter Jaye Mary, on March 31, 1995. Both my parents were with me in the delivery room and I remember Dad had this soft, gentle smile and tears in his eyes when he held her for the first time. She smiled several weeks later while lying on his chest, and he shared his love of camp by treating her to four summers at Camp Wawenock for girls on Sebago Lake.
The saddest time in our lives was when my mother passed away in her sleep on April 26, 2007. Dad said it was only then that he realized he was a quadriplegic because my mother had simply incorporated his needs into her daily routine. He credits her with making his life and success possible. To make matters even worse, a month after my mother died, Governor Patrick did not reappoint my father as commissioner, a second crushing blow. But true to my father’s character, he continued to make a contribution to the world. He started a consulting business, taught a disability policy course at Assumption College as adjunct professor, continued to serve on the board of the American Red Cross and Partners HealthCare, and moved forward with two significant projects to document the disability rights movement – being part of the team to produce Lives Worth Living, a documentary that aired as part of the PBS series Independent Lens, and writing his own book, The Road Taken: The Personal and Political Life of a Disability Rights Activist.
Elmer finished his book, but I’ll have to write the final chapter before it is published. It will talk about his strength of character, his perseverance, and his daily interest in helping others. I’ll write about this final trip to the hospital, and how he rallied enough to talk to my brother about his truck, to tell me that actor Tom Hanks should play him in the movie version of his book, and to hear one last camp song. He remained independent and in control of his destiny, as always, until his last breath.
Youth Leadership Forum (YLF)
After five years of this amazing event, we keep what works, and introduce new ideas to the youth of tomorrow. I've been asked to capture the greatness we experience for one week each year at Bridgewater State University running the Massachusetts Youth Leadership Forum, and thanks to many dedicated collaborators including: Easter Seals, Partners for Youth with Disabilities, Empowering People for Inclusive Communities (EPIC), Stavros, Boston Center for Independent Living, Center for Living & Working, Metro West Center for Independent Living, Independence Associates, Cape Organization for the Rights of the Disabled, Center for Human Development, Massachusetts Developmental Disabilities Council and the Massachusetts Rehabilitation Commission, we pulled it off again! While we stay on track with employment, assistive technology, and leadership trainings, we also added some new trainings to get the delegates and peer leaders to really reflect on their own personal experiences as people with disabilities.
This year started off the same way it always has, by having the peer leaders and staff captains spend the day together to prepare the peer leaders for the delegates arrival, but this year some new additions to the agenda served to bring us closer together. Empowering People for Inclusive Communities (EPIC) was invited to lead an Ableism training for everyone to participate in, and Flatline Poetry joined in to teach us that 'if you can feel it, you can speak it'. Needless to say, amazing work came out of the peer leaders that first day with the support of EPIC and Flatline poetry.
Day two started the same way it usually does; forty delegates arriving all at once! Once everyone got to know each other in their small groups, we all joined together to be welcomed by MRC Commissioner Charles Carr and Easter Seals President Kirk Joslin, who continuously and tirelessly encourages the youth to grab the torch and lead the way for all our futures. Thanks to Easter Seals, we then went on to learn how assistive technology can enhance our involvement in the community and level the playing field through the use of apps, a language all young adults speak. Once we finished dinner, we reunited with Flatline Poetry where the peer leaders showed off the spoken word they created the day before, and everyone joined in on open mic night. This, in my humble opinion, was an incredible part to YLF. The courage it took for delegates and peer leaders to get up in a public forum and use a mic to show off their talent and share their story was truly inspiring; I felt privileged to be in the audience.
Day three was filled with trainings for employment and advocacy. We split up and learned about the Young Entrepreneur Project from Partners for Youth with Disabilities and higher education from the Institute for Community Inclusion and at lunch we welcomed our career professionals from all over the Commonwealth to spark interest with the delegates and peer leaders in different areas of work. From lawyers, nurses and human services, we covered the gamut! Fresh off their lunch rubbing elbows with professionals, they got a crash course in myth busting benefits, and what an employer is looking for in an applicant. For their cool down, they learned all about communicating with others from the Self Advocate Leadership Series (SALS) program and what their disability rights are from YLF veteran, Stacy Hart. After all that learning, it was time to get our groove on to the favorite dance of the YLF! This year, we also added a Wii console for the gamers in the group.
Day four is always bittersweet, we all know it's near the end of our time together, but we still have important things to learn in order to lead.
The Transition to Adulthood Program (TAP) staff led a workshop, followed by a quilting project where the peer leaders and delegates created a patch on what disability means to them; the TAP staff then took their patch squares and create a quilt out of their artwork to display in their offices for everyone to see. Later in the day we were joined by Bill Allen, Director Statewide Job Placement Services and Representative Denise Garlick of Needham to teach everyone about politics and legislation and why they should get involved in their own communities.
We ended as we always do, with reflection. I once referred to this as the Kumbaya of YLF, and it feels that way, but this year I think I'll compare it to the quote of YLF. "Unless someone like you cares a whole awful lot, nothing is going to get better. It's not." Dr. Seuss. Much like open mic night, I feel privileged to hear what people share at the end of our experience together, and what I received from this year's crew was a whole lot of caring and solidarity.
Agnes “Kitty” Kemp
Girard A. Plante
Life at age five should not be accompanied with fear, uncertainty, loneliness and abandonment. But all those elements crept into the little girl whose mother abandoned her young daughter at the doorstep of Wrentham State Hospital.
Agnes “Kitty” Kemp was that five-year-young girl unable to advocate which direction she preferred her life’s journey to move toward in 1930. The draconian era of the 1930s saw scores of youngsters driven to state-run institutions by their parents, without choices and on advice of their family physician, to merely survive amidst an environment often fraught with neglect and abuse.
A doctor’s position of power and authority is all that existed for 150 years of placement in state-run asylums and institutions. Most infants and children with disabilities found placement at Fernald State School, Wrentham State School, Foxborough State Hospital and other places too numerous to list here.
Parents of children born with disabilities easily complied because they believed that their doctor knew best. Situations such as Kitty’s were that her mother could not keep her at home. Kitty was born with Cerebral Degeneration Seizure Disorder.
Families reported that physicians told parents: “Your child will be better off at a state institution.” With those words a child with a disability faced a bleak future. Life for Kitty worsened as staff at Wrentham State Hospital viewed her as sub-human, calling her “number nineteen.”
During my interview with Kitty, she never clarified why the staff refused to call her by her birth name.
One theory shared by MRC’s Service Coordinator, Lora Brugnaro, who currently manages Kitty’s daily care, is that staff may not have known her name upon admission to Wrentham State. “Such instances were common for decades. Searching through pages of documents at Wrentham State to know exactly how such a travesty occurred never revealed Kitty’s identity,” Lora Brugnaro Kitty’s case worker recalled the records showed Kitty’s family never visited. Kitty scrubbed the floors of Wrentham State School without compensation. She also tended to the younger children residing at Wrentham. “I wanted to go to school, but they (Wrentham staff) wouldn’t let me. They treated me like an animal,” Kitty said.
Yearning to escape from years of atrocious treatment at Wrentham, her only way out was “bad behavior.” Kitty explains: “I drank a bottle of ink. So they (staff) categorized me as crazy and discharged me to Foxborough State Hospital.” While there, she was periodically placed in straight-jackets.
Her mistreatment at Wrentham haunted Kitty years later. “It was better at Foxborough because I felt more like a human.”
Prior to the ink drinking episode, the house mother at Wrentham State took Kitty to her home. Kitty was considered “out on parole” while living with the house mother. Kitty recalls the time: “It all came about during President John Kennedy’s years in office.”
While at Wrentham State School, Kitty’s physical situation declined. Kitty struggled to walk without using a wheelchair. She went to Boston City Hospital for physical therapy to improve her ability to walk assisted by leg braces.
Finally in 1979, after four years living at Foxborough State, Kitty left institutional living forever. She was 49-years-old. Soon after, she obtained her first Social Security card. That’s also the moment she learned her real name.
Kitty’s life would change once again. She married a cab driver who proved to be a force in keeping Kitty out of Institutions. Six years into their marriage, Kitty’s husband died.
After winning her freedom from institutional existence, Kitty tried to live independently but became ill. She was re-admitted for two years in nursing homes. That’s when the Massachusetts Rehabilitation Commission (MRC) became involved. Kitty has lived independently the past 20 years in New Bedford with Personal Care Attendants working for her.
Vicky Ford, a Case Manager at Habilitation Assistance in Plymouth, oversees Kitty’s living situation and praises Kitty’s attitude despite her years-long struggle to live freely in the community. “Kitty has a fighting spirit that makes her a powerful self-advocate.”
Nowadays, 84-year-old Kitty finds comfort surrounded by numerous friends and considers her caregivers her family. “Oh, yes. I’m happier!”
Editor’s Note: Because of Kitty’s hearing difficulty, Lora Brugnaro and Vicky Ford both sat with her to ask questions and explain questions asked of her throughout the interview.
Life as a Brain Injury Survivor from Carbon Monoxide Poisoning
In 2005, three days before moving, an environmental inspector was testing my apartment unit to help me give my doctors some information. I had had six operations in four years (intestinal, gall bladder, bladder, and two for breast cancer- including radiation). There were nonstop respiratory issues, headaches, chest pains, nausea, almost total collapse of my leg muscles and memory and cognitive issues.
We suspected mold from the recent floods, but I was not prepared for this discovery. Yes, there was mold, but carbon monoxide was three times the legal limit in the basement, twice the legal limit in the hallways, and at actionable levels in my unit. Other contaminates indicative of furnace issues were at notoriously high levels in the furnace room, hall and my unit.
I moved out and disposed of all of my belongings per the Environmental Protection Agency guidelines (EPA).
After the mold and carbon monoxide issues had been identified, I hoped my health would improve. Some symptoms did improve, my taste and sense of smell returned within days. My legs were still weak but not getting worse. Other symptoms got worse. The headaches were still bad and the vision problems continued. I was hypersensitive to light, noise, and was having trouble holding a conversation.
Six weeks after moving out, the pain in my head intensified. I felt like I was being scalped by an ice pick and everything got worse. My diagnosis; a rare episode of re-oxygenation (lipid peroxidation) after carbon monoxide poisoning (CO).
And thus began my intense efforts for recovery. There was physical, occupational and speech therapy, aquatic therapy, nonstop tests, visits to neurologists and neuro-psych tests. Again, a few symptoms improved.
Every day became a new adventure and every minute posed a new problem. Shopping was a nightmare, confusion ruled everything. I couldn’t distinguish a can of soup from other canned food items. The glare and brightness of fruits and vegetables would have me running out of the store. Reading was an effort. I needed to block out everything except a few words to read. Movement along the peripheral vision would terrify me. Noises, such as an overhead plane, leaf blower, motorcycle or my vacuum would have my legs collapsing until the noise stopped. My vision was split on one side in two dimensions, the other in three dimensions.
Any re-exposure to mold or CO would have severe consequences. Entering a parking garage, traffic or road paving could send me to the hospital with severe respiratory and intestinal issues.
It took a year and a half for me to be part of a conversation. I would interrupt with something unrelated, get angry or answer something from ten minutes before. I felt isolated and afraid. I had to relearn everything. How to get to the market I had gone to for twenty years, walking, talking, reading, even my favorite Christmas songs. Life was overwhelming.
I had a great therapist who helped me to understand the changes a brain injury can cause. The physical therapist and occupational therapist helped me see that some of my issues were “stroke like without having a stroke.” It was finding a top carbon monoxide expert that really helped, not just for the legal action, but to send me to a highly specialized out-of-state rehabilitation program.
A high resolution Single-Photon Emission Computerized Tomography (SPECT) scan revealed the extent of the damage. The scan also measured the consistency of toxic exposure. A huge help for my medical team to see where the problems were located. It also helped them determine my inability to tolerate my current medication. Hyperbaric oxygen treatment was recommended by the experts, but I had been denied this initially as the CO levels were considered to low.
I saw a neuro-optometrist (a specialist working with the brain and vision) and was given several different yoked prism lenses in glasses for every type of lighting and felt immediate relief. I have been seeing that same neuro-optometrist for seven years. I have gone through at least 25 pairs of glasses and still improving. These glasses are highly specialized. Like a wheelchair, they are considered assistive equipment. Glasses with yoked prism lenses are like a “wheel alignment for the brain” bringing my brain back into place after being shifted.
I am very blessed to have had the treatments I did. Once an avid athlete, I am still able to swim and have aquatic physical therapy. My legal case was settled, with most of the funds going to the medical experts and lawyers. I received financing for one round of glasses and ten sessions of the necessary forty plus recommended hyperbaric treatments. The hyperbaric oxygen therapy (HBOT) provides relief from the headaches and help with some of the cognitive and muscular problems.
Health insurance has never covered my specialized glasses. While acute CO poisoning is listed as reimbursable, I have been repeatedly denied coverage. Instead, I have taken out loans for my glasses and out-of-state treatment travel expenses.
I am trying to regain some of my previous life as a professional writer and photographer.
Today, my concern is for those who have been or will be exposed to carbon monoxide poisoning. I would encourage everyone to understand the symptoms of Carbon Monoxide poisoning (CO). Get your furnace and hot water tanks inspected before and after heating seasons. If you experience any water/moisture problems watch out for mold. Before buying property get a full inspection and history of the furnace system.
Visit www.coheadquarters.com to learn more about CO poisoning and how to protect yourself and your family.
I was told I was less than an hour away from coma or death. My recovery has been a miracle. I am a survivor, thanks to God and my specialized rehabilitation team. I continue to pray for a miracle to receive the rest of my treatment and recover completely.
The Independent Consumer Consultant (ICC) program, helped me help myself, to be able get a job
Being an ICC is a great way to be in a work environment where people are there to support you. They can see what you're good at and help you through a project you may have some difficulty.
By going to work when Leslie Wish the ICC Coordinator called me, I was able to prove that I could arrive on time, professionally dressed and work throughout the day. Pretty soon, the days started adding up, the tasks I performed increased and I was able to excel at tasks. I had references that knew me, skills I learned for the job and in my personal routine how to go to bed early, eat breakfast, and show up. During interviews I could say, “Yes, I know how to enter data, I know how to answer a phone call and take a message, I know how to photocopy, I can fax.”
During my time as an ICC, Leslie Wish contacted me through email and phone to let me know when a job was available. Sometimes it was short notice, but it gave me the opportunity to prove myself.
Leslie walked me through the project step by step; breaking the process down into easy steps; folding, alphabetizing, counting and double checking. Sometimes the work was repetitive or stressful, but I was able to ask questions whenever I needed to.
Leslie is available by phone or at his desk. He checks in every hour to make sure I'm on track. If everything is fine, it's a short check in and hello. If I have questions or problems with the work I'm doing, it's an opportunity to step back and let Leslie assist. He always makes sure I understand what I'm doing and why.
Sometimes the process feels long, too many steps or I have faster ways I want to do it. But he reminds me there is a reason processes and steps are in place, even if I think I can do it faster or better.
Part of work is learning what your employer wants you to do, then doing it. The lesson's I learned are to show up, do what they ask the best I can, ask questions and be honest when I don't understand something.
A year later, I work four days a week at a job that pays me for the good, measured work I do. All because I showed up as an ICC and learned the skills needed to become employed.
Thank you MRC for teaching me skills, showing me that I could do them well, and giving me the opportunity to show someone else that I could do them well.
Talk to your MRC counselor today about signing up to become an ICC. Your counselor can help you fill out the application. ICC jobs have flexible hours, if they call you on a Monday, they may want you to come in on Tuesday, or the following Tuesday. Something I have learned is you can be ready to wake up that day, get dressed and go to work.
Thank you MRC for dusting me off, I am shiny and new, and working every day.
The AT Exchange in New England
The AT (assistive technology) exchange is MassMatch’s free AT device exchange program. The Equipment Exchange is similar to a “want ad” where pre-owned AT is listed in order to put people looking for AT in contact with sellers or donators. The Equipment Exchange is an opportunity to re-sell or buy AT for a lower cost than new items; such as,
- daily living aids
To buy, donate or sell used AT, call the toll free MassMATCH INFO-line at:
MRC/MassMATCH Program, DME Re-use. Accepting donations of gently used, recent model wheeled mobility, electric beds, lifts and other DME to be refurbished and donated at no cost to people of all ages in need in the Greater Boston area. Contact Randi Sargent at 617-204-3626 or Randi.Sargent@massmail.state.ma.us
Becoming an Individual Consumer Consultant (ICC)
The Massachusetts Rehabilitation Commission’s Consumer Involvement Program makes a special effort to form cooperative relationships with those individuals who are known as consumers or recipients of services.
We are interested in applicants for the ICC program that have skills and experiences valuable to the needs of the MRC. Such as data collection, office work and case support. The program is open to both MRC consumers and their immediate family members.
This program is for MRC clients to gain work experience and as such, they are encouraged to apply to gain meaningful employment skills working on projects as an ICC. This is not considered full time work, but it is a step on the road to employment.
Projects are usually very short term, one to three days in length, and there is no guarantee there will be consistent work. Every effort is made to accommodate all ICC’s with regard to skills and abilities.
If you are interested in becoming an ICC please contact Leslie Wish, Program Coordinator for the Consumer Involvement Program, at 617-204-3771 or by e-mail: Leslie.Wish@MRC.state.ma.us.
Go Green and Save a Tree
Have the Consumer’s Voice sent by e-mail. If you are interested please e-mail your request to:Consumer.Involvement@mrc.state.ma.us
A publication of the MRC State Rehabilitation Council
Alan Greene, Chairperson
Charles Carr, Commissioner, MRC
Elaine McHugh, Editor
MRC Staff Editors
Emeka Nwokeji, Director, Consumer Involvement
Sheila Wojdakowski, Human Resources/Customer Relations
Leslie Wish, ICC Program Coordinator
This newsletter is an independent publication sponsored by the MRC State Rehabilitation Council. The opinions expressed in this newsletter do not necessarily reflect the policy and practices of the MRC. They are solely the opinions of consumers of MRC programs and services.
For further information contact Emeka Nwokeji, Director of the Consumer Involvement Program, at 617-204-3665.
To receive the newsletter electronically, e-mail email@example.com.
This information is provided by the Massachusetts Rehabilitation Commission.