From the Editor's Desk
The Consumer Conference was held on June 29 and 30, 2011. This was the first Conference co-sponsored by the Massachusetts Rehabilitation Commission (MRC), the Massachusetts Commission for the Deaf and Hard of Hearing (MCDHH), the Massachusetts Commission for the Blind (MCB) and the Statewide Council of Independent Living Centers (SCIL). By all accounts the Conference was a great success. We had over 350 attendees. To be expected, we had some challenges, given the diverse population of people with disabilities we were serving. Somehow the Conference planning team managed to get it all done. Emeka Nwokeji has written an article for this issue giving all the details.
With our ongoing invitation to write for the Consumer's Voice we have two new writers. We welcome Marsha Decker-Rice and Barbara J. Webster. If you have considered writing an article, please contact me at 617-204-3664 or email me at
Are you working to expand your reach into the arts community? Are you a person with a disability who is also an artist? If so please send us (electronically) your bio and an image of your work. We will include you in the featured artist section of the Consumer's Voice.
Finally, we would like to call your attention to an article Karen Langley has provided entitled "Products and Technologies that Change People's Lives, Universal Design and Assistive Technology in Massachusetts," September 23, 2011 expo and conference. This is a showcase event with state of the art technologies and products that assist people to live full and independent lives.
From the Director's Desk
2010 Annual Conference June 29 & 30, 2011
The Sheraton Four Points Hotel in Norwood, MA was abuzz with consumers, providers, exhibitors, State Legislators and friends. They came from as far away as Maine and Washington, D.C. to experience the 2010 Annual Consumer Conference.
This year's Conference is unlike the Annual Consumer Conference of years past. The Conference had a joint sponsorship that included the Massachusetts Rehabilitation Commission (MRC), the Massachusetts Commission for the Blind (MCB), the Massachusetts Commission for the Deaf and Hard of Hearing (MCDHH), and the Statewide Independent Living Council (SILC). The joint Conference theme was "Beyond Independence."
In my position as the Director of Consumer Involvement, I had the pleasure to present the opening remarks and greet all attendees in the Tiffany Ball Room. I also posed this question, "Who can name the only state in the nation where you can find State Agencies serving all citizens with disabilities and headed by people with disabilities? If your answer is Massachusetts, to the best of my knowledge, you have the correct answer.
We are proud to have Commissioner Charles Carr of the MRC, Commissioner Janet LaBreck of the MCB, and Commissioner Heidi Reed of the MCDHH in leadership positions in this state. To the disability community, the joint effort is a clear statement of a united philosophy that people with disabilities have the belief and skills to direct how best to serve citizens of the Commonwealth who have disabilities.
The Conference Planning Committee was diverse and composed of all State Advisory Councils to the MRC, the MCB, the MCDHH Consumer Advisory Council and the SILC. The Conference agenda accommodated all including the Secretary of EOHHS, Dr. JudyAnn Bigby, who was our first day luncheon speaker. Dr. Bigby spoke eloquently and proudly of the accomplishments of the three agencies and the Independent Living Centers.
We had 2 sessions of consumer engaged and directed workshops, a total of 8 workshops per day. They ranged from Employment, Community Advocacy to Living Independently in the Community with assistive technology.
The Conference Center at Four Points was fully populated with vendors and exhibitors ranging from the Carroll School for the Blind, New England Index, Adaptive Driving, Partners for Youth with Disabilities and many more. Conference attendees had the opportunity to visit over 60 different resources in one location.
Our evening activities included a delicious dinner and the opportunity to hear from 2 State Legislators.
John Regan, Chief of Staff for Senator Mike Rush engaged the crowd with greetings from Senator Rush while he is serving our country in Iraq.
Representative John Rogers held everyone's attention welcoming all to Norwood; he raised our awareness of his past, present and future support of our service priorities as well as the needed funds and resources to make them happen. The evening ended with a film "Awareness and Action" coordinated by Ms. Jennifer Edwards-Hawkins (Disabled Persons Protection Commission).
The Commissioner of the nation's Rehabilitation Services Administration (RSA) Lynnae Ruttledge was the Joint Conference guest speaker during lunch the second day. The Tiffany Ballroom tuned in to her tremendous message with a voice as clear as crystal. She shared a recent communication from Washington, D.C. on transition plans for the next generation of advocates and leaders in the disability community.
We cannot express enough our gratitude to the workshop presenters and facilitators. They helped make this first of its kind Joint Conference remarkable and historic in nature. As one consumer commented on their evaluation form, "This is one of the most successful Conferences, benefitting all of our agencies staff, consumers, providers and the Executive Office of Health and Human Services."
As we await the completion of the Conference evaluation analysis I would like to take this opportunity to thank all who attended the Conference, the MRC Consumer Involvement staff, the Conference Planning Committee, the Communication aides, such as ASL interpreters, ethnic language translators, PCA's, transportation providers, and indeed the hotel staff and chef for the excellent, excellent food.
Appointment of Fabienne Renelien-Hanigan
It is with great pleasure to announce the appointment of Fabienne Renelien-Hannigan as the Area Director of our Roxbury Area Office. Fabienne has been an employee of the MRC since 2001. She began her career at the MRC as a Bilingual Counselor and was promoted to a Unit Supervisor position in 2005. In 2009, Fabienne was appointed as the 'Acting' Area Office Director. In her leadership roles at the MRC, Fabienne has demonstrated a strong commitment and dedication in leading the Roxbury staff.
Fabienne holds a Masters' Degree in Rehabilitation Counseling from Boston University and she is a Certified Rehabilitation Counselor. Fabienne is also a successful graduate of the Commonwealth's Management Certificate Program. Please join me in congratulating Fabienne in her appointment as the Roxbury Office Area Director.
Bureau of Engraving and Printing Launches EyeNote™App to Help the Blind and Visually Impaired Denominate US Currency
The Bureau of Engraving and Printing (BEP) has developed a free downloadable application (app) to assist the blind and visually impaired denominate US currency. The app is called EyeNote™. EyeNote™ is a mobile device app designed for Apple iPhone (3G, 3Gs, 4), and the 4th Generation iPod Touch and iPad2 platforms, and is available starting today through the Apple iTunes App Store.
EyeNote™ uses image recognition technology to determine a note's denomination. The mobile device's camera requires 51 percent of a note's scanned image, front or back, to process. In a matter of seconds, EyeNote™ can provide an audible or vibrating response, and can denominate all Federal Reserve notes issued since 1996. Free downloads will be available whenever new US currency designs are introduced. Research indicates that more than 100,000 blind and visually impaired individuals currently own an Apple iPhone.
The EyeNoteTM app is one of a variety of measures the government is working to deploy to assist the visually impaired community to denominate currency, as proposed in a recent Federal Register notice. These measures include implementing a Currency Reader Program whereby a United States resident, who is blind or visually impaired, may obtain a coupon that can be applied toward the purchase of a device to denominate United States currency; continuing to add large high contrast numerals and different background colors to redesigned currency; and, raised tactile features may be added to redesigned currency, which would provide users with a means of identifying each denomination via touch. More information is available at www.eyenote.gov.
Products and Technology that Change Peoples Lives
On September 23, 2011 an expo and conference 'Products and Technologies that Change People's Lives, Universal Design and Assistive Technology in Massachusetts ' will take place at the Hynes Convention Center in Boston, MA.
This event will showcase state-of-the-art technologies and products that assist people to work, live, learn and play across the spectrum of ability and age. The event aims to provide insight into the way that design, science and engineering are helping people to live more full and independent lives.
The expo will take place from 9 a.m. - 6 p.m. and is free and open to the public. Come and explore the latest technologies and get to know cutting-edge companies that are leading the way in this field. The expo will include multiple exhibitors with a wide range of consumer products, information and communication technology, sport and recreation equipment, furniture and new trends in wheeled mobility. There will be a large hands-on demonstration area where people can test out products.
A conference will also take place from 9:00 AM until 3:45 PM in which registered participants can learn more about advancements from leaders in areas of universal design and assistive technology. The conference will allow participants to choose sessions in four focus streams: work, community living, lifelong learning and recreation. Interested parties can register for the conference through the online web-portal for this event www.changepeopleslives.org. Sponsorships are available for those that the conference fee imposes a hardship.
Additionally, a design competition is under way for current Massachusetts' college and university students as well as people not more than 10 years post-graduation. Perkins School for the Blind has committed $5000 for the 1st prize and other awards are in the works. Come and see the ideas for the future of inclusive and assistive technology and design from these young adults.
To get added to our mailing list for general information send an email to: email@example.com or visit the website which will launch at www.changepeopleslives.org. To get a sense of the diverse ways these technologies are being used, visit the You-Tube channel MassChangeLives to see many informative videos.
Watch and Learn
This article first appeared in Advance for Occupational Therapy Practitioners.
Like thousands of other disabled Americans, I received a new lease on life by using assistive technology (AT) products. However, when I became permanently disabled 22 years ago there was no Internet. Consequently, it was difficult to gather information about AT. Today, thanks to YouTube videos, anyone can access detailed product information by watching a comprehensive selection of AT product demonstrations.
Since my introduction to the world of assistive technology 12 years ago, I've tried to promote AT awareness by writing articles for AT newsletters and magazines. It wasn't until I discovered YouTube and made my own AT video that I came to fully appreciate the importance of demonstrational AT videos. The site has become an invaluable resource for information about the vast array of assistive technology products available to members of the disabled community.
AT in Action: Perhaps YouTube's greatest strength is that it possesses one of the largest collections of AT videos located anywhere on the Web. There are thousands of AT videos featuring hundreds of diverse products. These products meet a multitude of different disability needs such as vision, hearing, speech communication, etc. So, no matter what type of product you're interested in, there's a good chance you'll find a helpful video on YouTube.
There is no substitute for actually seeing an assistive technology product in action. Videos afford viewers with the opportunity to witness the miracle of assistive technology. You can watch a blind person read using an audio reading scanner. You can watch a quadriplegic turn on the bedroom lights and turn on the television using a voice activated environmental control unit.
Videos introduce viewers to many different products and also serve as an effective teaching tool. Anyone who has used a standard computer appreciates how difficult it is to remember how to utilize a software program feature after someone shows you just once. The same challenge exists for those trying to learn how to use any assistive technology product. A person can simply go to YouTube and watch an AT video multiple times to remind them how to operate specific product features.
A Variety of Perspectives: Another strength of YouTube is that it has three distinct types of AT videos that combine to provide the viewer with a very well-rounded analysis of an AT product.
Videos made by manufacturers try to appeal to as many consumers as possible, so they demonstrate many features of the product.
Videos made by AT professionals, such as Occupational Therapists (OT), AT specialists or special education teachers, usually demonstrate those product features which have been most commonly used by his/her group of clients/students.
Videos made by AT users who are disabled demonstrate those product features that meet the user's specific disability needs. This type of video also gives us insight into the product's profound effect on the user's quality of life.
Videos made by AT professionals and disabled users are especially valuable to viewers because they discuss the strengths of a product as well as its weaknesses. These videos help potential consumers make more informed purchase decisions regarding AT products.
User-friendly Features: A third major strength of YouTube is its assortment of user-friendly features that make it easy for everyone to access and disseminate information about assistive technology products.
Anyone can view YouTube videos; no account is required. You can access thousands of AT videos via the YouTube search engine, which cross-references video titles as well as video descriptions. You can search by product name, specific need (e.g., vision, hearing or communication), or by disease or disability (e.g., autism, multiple sclerosis or quadriplegia).
Video owners can also tag their videos with relevant terms. By clicking a tag, you can access other videos with the same tag. Browsing by tags is an effective way of viewing similar AT videos. There are also helpful functions for viewing videos, located on the video toolbar. These include play/stop, volume control, full-screen and closed captioning (if available).
Creating a YouTube accountis free and very easy. Once you've created an account, you'll be able to save your favorite videos and upload/post your own videos as well. You'll also be able to rate videos that you watch, post comments to videos, and e-mail fellow YouTube members.
Posting videos, uploading and posting your own video on YouTube only takes a couple of minutes. Your video can be up to 10 minutes in length. You can allow viewers to rate your video ("like" or "dislike") and/or post comments beneath it. You can also control who is able to view your video. In the video description, you can include links to other relevant sites. Owners of AT videos frequently use this feature to link to the product manufacturer's web site.
Once you've posted your video you can add closed captioning. Many AT videos on YouTube currently do not have closed captioning. However, in an effort to make videos more accessible, YouTube has introduced a captioning feature called "automatic timing." I recently used this feature for one of my AT videos and found it to be accurate and easy to use.
Embedding videos : YouTube permits the sharing of its videos by embedding them in external websites. If the video owner allows embedding, anyone can embed the video by simply adding the provided embed code into the HTML of an external website.
Those who write about AT online can use embedding to provide readers with visual aids. A disabled user of AT can embed a YouTube video onto his/her personal Facebook or MySpace page, and thereby show others the role assistive technology products play in his/her life. Online distributors of AT products often embed YouTube videos on their sites to provide consumers with as much information as possible.
Video contests: YouTube provides an ideal forum for video contests. The Assistive Technology Industry Association (ATIA) recently hosted a national AT video contest via YouTube to promote AT awareness. Disabled contestants were asked to show how assistive technology has empowered them. The contest received 29 video entries with a total of over 20,000 views.
I was honored to win 1st place in the contest. Participating gave me the opportunity to demonstrate that today's AT is both multifaceted and user-friendly. I was able to introduce nearly 2000 viewers to the AT products that have immeasurably improved my life.
Many viewers contacted me and said they had no idea such technology existed. This reinforced my belief that there's a definite need to educate about AT. It also made me realize the important role that the Internet, and YouTube, specifically, can play in promoting AT awareness to a mass audience.
The ATIA contest site features 12 award-winning videos that show disabled AT users utilizing many different types of products. These videos provide viewers with an excellent overview of the broad spectrum of AT products on the market. ( http://www.atia.org/i4a/pages/index.cfm?pageid=3715)
The abundance of assistive technology information available on YouTube is the direct result of the efforts of hundreds of individuals who seek to share their knowledge with others. I encourage you to join them in this endeavor. Together we can create an unprecedented level of national AT awareness!
Peter Gefteas, is a member of the Massachusetts AT Program Advisory Council.
CommonHealth Makes Sense
One aspect about working with a disability is the availability of affordable health insurance coverage. With private health insurance premiums skyrocketing, and the out-of-pocket cost running up, people with disabilities who want to work are not able to make their monthly rents because of these costs. The need for affordable, high-quality insurance is greater than ever, especially for people with disabilities.
Fortunately, there is CommonHealth, an off-shoot of the state's MassHealth, a state coverage program for people who have limited resources.
Unlike MassHealth, CommonHealth is designed for working individuals with disabilities; there is no income or asset limit. The monthly payments are based on a sliding income scale. There are no out-of-pocket costs for just about everything from dental services to physical and occupational therapy. More importantly, folks do not have to spend down, especially for Personal Care Assistance (PCA) services.
In my experience, CommonHealth has been a godsend. Prior to getting approval for this vital service, I had always chosen the employer offered health insurance, which was fine, until my last full-time job about 6 years ago.
My wage was miniscule and for a short while I did not have health insurance. When I picked up health insurance again, my earnings remained the same for three years while premiums went higher. As my earnings stagnated, the latter became an issue. How am I going to manage my limited finances when the cost of health care continues to skyrocket, and my salary remains the same? It never made sense to me.
After taking a voluntary layoff in 2005, I applied for my social security benefits and received approval. I also received Medicare, Part A. At this point, I had terrible neck and back issues and also received a diagnosis of scoliosis that continues to this day.
I went back to school and since 2007 have a part-time job at an independent living center. While working, I switched to CommonHealth with the sliding scale premium.
Today, I pay a monthly premium based on my income for CommonHealth. I get basic dental care, prescription drug coverage, and regular preventative check-ups with my primary care physician. Plus, I am seeing a physical therapist for my hips and back.
CommonHealth provides quality health insurance coverage with premiums based on income. Most importantly, a person with a disability can earn as much as they are able, as well as save and invest their earnings, without losing their health care coverage
Lost & Found
Barbara J. Webster
Twenty years ago I thought I had lost my mind and I was going to go crazy and die, literally. I had been in a car accident. I looked OK but I had sustained a severe case of Temporomandibular Joint Disorder (TMJ) or whiplash; neck, jaw and shoulder injuries. As I slowly healed from my physical injuries, I realized I couldn't do any of the things mentally that I used to be able to do with ease. Eventually, I was diagnosed with a "mild" brain injury.
Gradually, very gradually and with the help of some "earth angels." I found my way to the Brain Injury Association of MA (BIA-MA) and their support groups, to cognitive therapy and eventually to the vocational division of the Massachusetts Rehabilitation Commission (MRC).
Today I work part time for BIA-MA, facilitating support groups and assisting other support group leaders.
The counselors in the Milford MRC Office were instrumental in helping me overcome the seemingly insurmountable roadblocks to regaining a paying job. I had no idea where to start. I couldn't do the kind of work I used to be able to do. They helped me get over those huge hurdles of updating my resume and preparing for job interviews. They also helped me regain my self-confidence, perhaps the most valuable component in the rehabilitation process.
When you lose your job, your self-confidence always takes a big hit. I felt fragile; I didn't think I had any strength anymore. Without self-confidence, you don't feel whole. You don't really believe success is a goal; so it is hard to feel motivated. Every set back is devastating, undermining your self-confidence even more. Rebuilding my self-confidence was imperative for me in order to be able to move forward and have the inner strength to weather the normal set backs associated with getting back to work, especially while working around limitations due to my disability.
How did the MRC counselors help me rebuild self-confidence? In many ways, formal and informal. They had tests and workshops and ongoing groups to help me identify personal strengths. They connected me with supplementary services when appropriate, like acquiring adaptive equipment or talking to a representative from Social Security regarding benefits. They even had a workshop on "dressing for success." They were real hands-on help, guiding and assisting me in my process of regaining whatever skills would be helpful in getting back to work.
Most important of all, they were always positive and supportive. They encouraged me to keep developing the materials I was putting together for the brain injury survivor support group I was facilitating. I'm sure they had no idea that encouragement would eventually lead to a published book:
Lost & Found, a survivor's guide for reconstructing life after brain injury, by Barbara J. Webster. It is a collection of tips, tools and strategies, organized by topic, to help brain injury survivors and others struggling with cognitive difficulties in their rehabilitation, a process that continues long after formal therapies have ended. In addition to auto accidents, cognitive problems can originate from many other causes; strokes, falls, sports injuries, blast injuries, chemotherapy, gunshot wounds, domestic violence, anoxia and more. I have been told that my book is helping people with Multiple Sclerosis and Parkinson's disease as well. www.lapublishing.com/survivor-cognitive-strategies/. Thank you to the MRC for all you have done and will continue to do.
"I Sometimes Wonder"
Marcia Decker Rice
I am Marsha; I am also a Mother, Grandmother and a Great Grandmother. I enjoy singing in my church's choir, occasionally singing a duet or solo. I have a telephone ministry to people who are ill, lonely or just unable to attend church. I have volunteered as a chaplain in two nursing homes. Gordon Conwell Seminary accepted me as a student. However, my health issues contributed greatly to my decision to withdraw.
My disabilities include post polio syndrome, coronary artery disease and diabetes. I get around using my power chair.
I am grateful that I was able to care for my husband, who was my love, at home. He had become bedridden, blind and hard of hearing. My husband was very afraid of having to go to a nursing home.
My quality of life has been improved because of the Massachusetts Rehabilitation Commission (MRC). The MRC came into my life when I applied for services via the Home Modification Program and Vehicle Modification Program.
The Home Modification Program assisted me with ramps, porch lift, stair glide and bathroom needs. The Vehicle Modification Program provided hand controls for my vehicle.
In closing, I have accepted my disability and every day I search and seek what else I can do. I believe that God has planned much more for me to do.
"I sometimes wonder."
We often think that miracles happened long ago and do not occur at present.
We live in a very fast paced world when the primary objective is to make money, get along with very little sleep, make more money so we can "chillax." only to get back to work. Then, there are many folks who believe that body image, fashion, as well as keeping up with the latest style and trends in automobiles and music matter. These things are good, up to a point. However, suppose for a moment that you, or a friend, or a family member, were going about their day-to-day routine and out of the blue, you or they were "in the wrong place at the wrong time" hit by a car or a bullet; diving into water that was too shallow; a slip on ice; a spill in a restaurant; or in the shower; along with any number of careless mistakes like missing a stair, reaching into a snow blower, or any number of "accidents."
Unfortunately, the human body, with all of its wonderful God given abilities and intricacies is flawed, its parts break, wear out, get a kink in them, and need to be replaced.
As mentioned many times in this sanctuary, we are in the middle of one of the Meccas of medicine. I have been skeptical about this claim, until recently.
As some of you know, I had a Laminoplasty at MGH at the end of January, which marked the end of 5 years of searching for the reason for the decreasing function of my left arm, the extremity I rely on the most to pilot my chair and to operate my computer. I did not know if the symptoms were related to aging, my cerebral palsy, or to a previous spinal cord injury that occurred in 1987. At the end of last summer, after being empowered by the messages here at Ruggles, Park Street Church, and my third experience at Joni and Friends, I finally met a neurosurgeon who examined me and took my complaint seriously.
The MRI revealed "a bend in the river" of the spine-a place where the spinal cord was being compressed, causing my problem. After additional prayers and discernment, I "went for it" and basically had the doctor open the problematic area of my spine, which was very narrow; cutting off nerve signals and impulses. The procedure is something like what your lobster goes through when you pull back the shell/ spine and are trying to expose the meat/ spinal cord. While it is messy and expensive, melted butter is not used.
After a few days in what I learned is "man's greatest hospital," MGH, I was transported to Spaulding where I underwent physical rehabilitation for about a month.
Rehabilitation is a process in which people work hard to regain ability either lost by tragedy or by happenstance. The individual undergoing the recovery process has likened it to a marathon, because it takes much determination, effort, as well as physical and mental strength. They often have to "dig deep" to obtain their goals of regaining even the most simple of life's tasks. Progress may come slowly, but it should never be minimized. I believe that it was Plato who said, "A turtle cannot advance without sticking its neck out." This is a good approach to life in general, but therapists in the rehabilitation field might question this wisdom if the turtle was engaging in dangerous behavior that might lead to a spinal cord injury or something more catastrophic.
The rehabilitation process occurs with the assistance of a team of many dedicated individuals; doctors, nurses, and personal care attendants, along with many other support people. This integrated approach allows people undergoing rehab to avail themselves of a challenging, encouraging, nurturing environment that is full of humor and tough love. The aim of rehabilitation is to access what abilities the individual has or has the likelihood of regaining, and then capitalize on their strength, endurance, and coordination. The rehabilitation professionals give them the tools and the strategies they need in order to get back into society in whatever way they can.
Along the way, true miracles do occur. At rehab, some people stand on unsteady feet and slowly walk again, ultimately to return to the field or court. For others, opening a pill bottle while at a counter is a feat. For other folks, muttering the words "I love you" after a stroke is miraculous, even if it is not Valentine's Day. In my case, being able to move my arm and drive my wheelchair again is sensational, because I did not know how much ability I would regain given that it had been a while since my injury.
I am grateful to everyone at Spaulding who has been instrumental in my rehabilitation. The other people that I have gotten to know during my stay here have also inspired me. They have become sources of my strength, courage and motivation.
Although I have been part of the disability community for many years, the people I met constantly encouraged me. I only hope that I have returned the favor and assisted others on their own quest to rediscovering our own collective strength.
I am so thankful for the thoughts and prayers from many people on my behalf. To The Divine Healer, who empowers medicine to work, people to have compassion, and who is the ultimate source of encouragement, friendship, and strength, is all the glory and honor in each and every recovery. Amen.
Tim Kunzier is a member of the Ruggles Street Baptist Church. He originally delivered this message of hope and healing on March 13, 2011.
Everyday heroes and heroines are not always found on the cover page of the sports section. Nor are they always seen on popular TV shows. Or even within the hallowed halls of the U.S. Congress. They are easily spotted at arm's length in our neighborhoods, places of worship, work places, city streets and most everywhere.
And they may not all be walking. So it is with a champion of causes who enhanced the lives of people with disabilities for nearly 40 years in New England and beyond.
James Patrick Tierney never merely strolled in his power chair into public hearings at the State House in Boston or when meeting with elective federal public servants. He arrived armed with ammunition: knowledge of state and federal laws to ensure justice was being preserved for people with disabilities long oppressed by a mean-spirited, indifferent system.
Jimi, as he was affectionately called by family and friends, knew the sting of injustice after a spinal cord injury in 1971 placed him in various hospitals before residing for five years in Zambrano State Hospital in Rhode Island. On Saturday, June 4th, Jimi passed away in his Arlington home. He was 55.
While at Zambrano, he grew incensed by the poor conditions of the institution's lack of a quality of life. Jimi blazed a path to change the facility's archaic culture. The Patients for Progress became more civil rights movement than mere concept. He met directly with Zambrano's administrator seeking a variety of nutritious foods and barrier-free access across the hospital's grounds. His efforts to effect change proved successful.
Those victories became the foundation for a future of fearlessly advocating for an array of changes on behalf of people with disabilities. His savvy business acumen and radical advocacy approach brought more rewards. Upon leaving the institutional setting forever, he arrived in Boston in 1981, where he participated in the Transitional Living Program (TLP) offered by the Boston Center for Independent Living.
The TLP, as the program became known, afforded people with all manners of disabilities opportunities to learn to live independently after their departure from rehab facilities, state institutions, or one's first-ever attempt to leave the family environment to stake their own unique course to attain aspirations similar to their able-bodied cohorts.
Soon after graduating from the TLP, Jimi landed a job at BCIL as an independent skills trainer. He worked in various capacities there until his death. Courtland Townes, Deputy Director of BCIL, met Jimi in 1995. "He took me under his wing and provided grounding on disability rights," Courtland responded.
Jimi was Courtland's immediate supervisor after being sought by BCIL to write grants for youths with disabilities to attend summer camps. They both served as Co-Executive Directors in 1999.
"Jimi's concepts were more focused on access and inclusion to ensure high quality services," adds Courtland. "He believed in the consumer control model versus the medical model in administering the Personal Care Attendant Program."
In 1988, Jimi met Mary at a Boston area eatery. After a few dates and meeting Mary's family, they married and became parents to their daughter Kelsey. "One of my fondest memories of Jimi is his determination to advocate for the patients at Zambrano. Patience was his greatest virtue," Mary said.
Courtland grew closer to Jimi during Mary's difficult pregnancy. "Jimi visited his wife every single day. I'd drive him in his van after work, then go home to eat, then return to Arlington and didn't get home until 9:00 p.m."
Mary gave birth prematurely and praises Jimi's "calm demeanor" for getting her through the tough time. "He always reassured me. He had a calming effect with everything I dealt with," Mary said.
One important person in Jimi's life over the past 14 years is his primary PCA Noah Zazinga. "Jimi introduced me to the disability world. I learned a lot just being around him. I learned a lot about myself," Noah said. Noah is a skills trainer at BCIL. "Because of Jimi, I'm here."
News of Jimi's death spread quickly. Because of space limitations thoughts from only a few friends and colleagues are included. MRC Commissioner, Charlie Carr, wrote: "Jimi was a force. He played a pivotal role as BCIL transitioned to another level that needed somebody with his personality and hard work to nurture it."
"Jimi was a tremendous mentor and taught me most of what I know and value about the independent living philosophy," says Mary Glover, Executive Director of Boston's Community Medical Group.
"Jimi was a great example of making the best life for himself and his family not to mention all the people he helped," said Joe Tringali, Community Services Director for Stavros Center for Independent Living in Amherst.
Paul Spooner, Executive Director of the Metrowest Independent Living Center in Framingham, fondly recalls his longtime friend: "Jimi was an awesome guy and advocate."
Still, no one person can sum up Jimi's life more accurately and lovingly than his wife Mary. "He endured so much during his lifetime and with his disability. He was always there for me and our daughter. Jimi would be my hero."
Vincent A. Adamski a founding member of Ad-Lib Inc. of Pittsfield MA
A longtime resident of Pittsfield, disabled all of his life, Mr. Adamski was a member of United Cerebral Palsy (UCP) where he was an active member for fifty years. While with UCP he served on the Board of Directors for the past decade. He was also one of the founding members of Ad-Lib of Pittsfield. Vincent was very active in the community and a longtime advocate for the disabled. Vincent Adamski was the1999 recipient of the Morrow Fleming Award. His passion was helping others. He was also a longtime fan of the Boston Red Sox.
Mykola Yakovkin is a resident of Lynn, Massachusetts. He is an amateur artist who believes his work can bring some fun, merit, beauty, and harmony not only to his life, but into other people's homes.
Usually his imagination is driven by the music he listens to, trying to relax and to calm his stress or pains down. Creating art helps Mykola to restore and maintain some brain functions that have been suppressed since a childhood head injury.
Mykola uses various materials, styles, and techniques. He can spend hours with his camera hunting for a single "picture of the day." He also makes stained glass icons. This year Mykola is rediscovering, for himself, the medium of color pencils on paper.
The Consumer's Voice
A publication of the MRC State Rehabilitation Council
Youcef "Joe" Bellil, Chairperson
Charles Carr, Commissioner, MRC
Elaine McHugh, Editor
Barbara J. Webster
MRC Staff Editors
Emeka Nwokeji, Director, Consumer Involvement
Sheila Wojdakowski, HR/Customer Relations
Leslie Wish, ICC Program Coordinator
Lisa Weber, CI 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, send an e-mail to firstname.lastname@example.org
This information is provided by the Massachusetts Rehabilitation Commission.