From the Editor’s Desk:

Welcome to the Fall 2015 edition of the Consumer’s Voice.

In this edition we have articles focused on our youth, continuing education, our history of strong advocates, personal stories, and adventure.

The Massachusetts Youth Leadership Forum (YLF) is a three day event for high school students and young adults with disabilities.  The YLF provides opportunities to network with peers, learn from each other, attend workshops, and be inspired by guest speakers.  See the interview between Mary Ellen MacRae and Valarie MacIver. Initially, Valarie came to YLF as a delegate, but she returns this year as a peer leader.

Girard Plante writes a tribute to late Senator Tom Kennedy and Gioacchino “Jack” Grieco, two prominent members of the Boston disability rights movement.
 
Tim Kunzier writes about his quest for James Taylor concert tickets and the surprising adventure he had getting to the front row.

The Massachusetts Developmental Disabilities Council completed its pilot year for Independence College, which provides a learning opportunity for people to build a foundation for life as an adult.  Matthew Bander, a Statewide Rehabilitation Council member, belongs to the first graduating class. Matthew shares his thoughts on the benefits of attending Independence College.  

Lastly, we welcome Remon Jordan, outreach coordinator for Multicultural Independent Living Center (MILCB) in Boston, MA.  He provides us with an informational article on services available at MILCB.
 

The Massachusetts Youth Leadership Forum (YLF)
Mary Ellen MacRae

The Massachusetts Youth Leadership Forum (YLF) is a three day event for high school students and young adults with disabilities.  The YLF provides opportunities to come together, learn from each other, attend workshops, and be inspired by guest speakers.  This years workshops included such topics as: self determination, disability history, advocacy, relationships, employment, legislation and ableism.

Guest speakers included Adelaide Osborne, Commissioner Massachusetts Rehabilitation Commission (MRC); Kirk Joslin, President of Easter Seals; and Regina Snowden, Executive Director of Partners for Youth with Disabilities (PYD).  

The career mentor luncheon provides YLF participants the opportunity to meet with professionals from different employment backgrounds. Luncheon guests included Josh Mendelsohn, attorney for MRC and Francisco Urena, Veterans Affairs Secretary.  

The following is an  interview with Valerie MacIver, discussing her two year involvement in YLF and her return this year as a peer leader.  

Mary Ellen: How did you learn about the YLF as a delegate?

Valerie: I wanted something different and started looking on the Internet for something to do within the disability community and found YLF. At first it looked like a good opportunity to sleep away from my house.  I went to Easter Seals and met Desi Forte; this is when I realized I didn’t really know people with physical disabilities and thought ‘wow, YLF seems cool and inclusive’.

M: First you were a delegate.  What made you want to come back as a peer leader?

V: When I arrived as a delegate I didn’t know enough to lead others, but by the end, I felt like I could come back as a leader.  YLF showed me that I could do anything I set my mind to and I wanted to show other people that they could as well.

M: What was your first impression arriving as a peer leader for the full day leadership training?  

V: It was very helpful.  I transition slower and need to get my anxiety under control and realize I’m in a safe place.  Having the smaller group and meeting people I was going to work with versus the people I’d be supporting was helpful.  I was surprised how I stepped up to the plate and went in open-minded.  

M: What was going through your mind when all of the delegates arrived?

V: I was thinking I’m finally comfortable, and now all those people are here.  

M: What inspired you the most this week?
V: I was overwhelmed. I wasn’t totally sure why. I knew I wanted to sing a song at open mic night.  I had stepped out of the main room and Desi had come by and said “no pressure, but if you think you can come back in, Karma (service dog) will be there to help you”. I sat with Karma the whole time and by the end, I was able to participate and sing my song. I sang “Back to December” by Taylor Swift; when I realized people really liked it, I also sang “Vanilla Twilight” by Owl City. “The Beat Goes On” by Deep Chinappa of PYD was my favorite part.  The best part was the drum solo.

M: What did you take away from the YLF experience?

V: A newfound awareness and acceptance of who I am as a person with a disability.  I attended an Ableism workshop led by Jeff Lafata of Empowering People for Inclusive Communities (EPIC).  

Each participant was given six index cards that we filled out: name, religion, gender identity, disability, sexual orientation, a future goal.  One by one Jeff asked us to give up a card, essentially giving up pieces of your core self until one card is left.  He asked us why that card was the most important part of you.  My final card was a future goal. That card read ‘to accept myself for who I am’.  None of the other cards would have mattered to me if I hadn’t accepted who I was.  As long as I’m okay with who I am, I don’t have to be frustrated when other people are not okay with who I am.  
YLF is a collaborative effort between Easter Seals, Partners for Youth with Disabilities, Empowering People for Inclusive Communities, Stavros, Boston Center for Independent Living, Cape Organization for the Rights of the Disabled, Independence Associates, Metro West Center for Independent Living, Center for Human Development, Massachusetts Developmental Disabilities Commission, Center for Living and Working, City of Boston Commission for People with Disabilities, and the Massachusetts Rehabilitation Commission.

Jack Grieco and Tom Kennedy; Advocates for Disability Rights
Girard A. Plante

Jack Grieco and Tom Kennedy, two heavyweights of the Boston area’s disability rights battles, have passed away.

Gioacchino “Jack” Grieco passed away from cancer May 25th, he was 55. Jack became disabled at the age of 14 following an accident. He served as a housing coordinator and was a member of the board of directors at BCIL.

This did not limit Jack’s life.  Over the past 41 years it was filled with enormous accomplishments for people struggling to adapt to a spinal cord injury. He bore through government bureaucracies to help others with various disabilities, by maneuvering public policy effecting change whenever he could.

At his tribute, laughter echoed through the packed room overlooking Winter Street in Downtown Crossing. Jack’s humor shone through while friends recalled his “weird ways” of successfully hiring personal care attendants.  Others remembered Jack holding secret meetings after BCIL’s doors closed, drinking beer while strategizing the best ways to convince Mass Health officials to fund the PCA Program.

In 1971, Senator Tom Kennedy (D-Brockton) broke his neck at age 19. He was studying to be a Catholic priest. After returning home from rehabilitation in 1973, Tom was appointed ombudsperson for the City of Brockton. Ten years later, he won election to the House of Representatives. In 2008 his constituents elected him to the Senate, the seat he held until his death June 29th from “complications related to his treatment for cancer,” he was 63.

Governor Charlie Baker knew the Senator for years and stated publicly “Kennedy’s perseverance in overcoming his disabilities served as an inspiration for all those who knew him and for many more who are also working to surmount their own challenges in life.”  

Both Tom Kennedy and Jack Grieco grew into active advocates, giving boundless energy and truckloads of time to enhance the lives of people living with disabilities.  They set out on a curvy path toward empowering people to live independently.

These men never chose to live the complexities of spinal cord injury. The fate of their accidents chose them to be the next people with disabilities joining our community. Through years of activism, they crossed paths at public hearings and meet-ups in Kennedy’s office to discuss legislation supportive of the unique needs of people with disabilities.  

We are grateful for their dedication and service to people with disabilities throughout the Commonwealth.

Fenway Miracle
Timothy J. Kunzier

My life has been hectic, to put it politely, for the last two months and I was aware that James Taylor was coming to Boston on August 6, 2015. I did not have the time or the energy to pursue tickets. My plan was to go to Fenway that evening and sit outside Fenway Park and listen.  You don’t have to see the performer to enjoy the experience. I had no idea what was in store for me that evening.

At 5:00 P.M. I went to the box office and was informed that the tickets were $90 each. I did not want to pay that amount, so I walked away from there and encountered a woman who wanted to sell me a ticket for $75. When I told her I needed a half hour to meet my PCA, the deal was off.

Soon afterwards, I met up with my new PCA, Adam, and went back to Fenway, but I could not locate the woman offering $75 dollar tickets. Therefore, Adam and I went to get pizza and found a spot near Fenway to have a picnic.

In a matter of minutes, a complete stranger approached Adam and I and asked if we would like tickets to the concert.
After asking how much, the woman replied, “free.” I did not have to be asked twice, and a few minutes later she appeared with the tickets. She simply said, “enjoy” and walked away.  Stunned, Adam and I quickly packed up our picnic and made our way to the park.
 
Once finding our seats, the usher in that section informed us that they did not have any more accessible seats and directed us to customer service. Adam went to the customer service desk and explained the situation, and in a matter of minutes, we were being escorted onto the field into another accessible section. Only 30 feet away from the stage. I later learned that many of the survivors of the Boston Marathon Bombing were in that section with me.

It was an amazing experience. James Taylor played a mixture of his old material and new songs from the album “Before This World” for three hours straight. For a man who is 67 years old, this is amazing. Bonnie Raitt opened for him, and later joined him on stage for the last half hour. The most touching moment of the night was when Kim, his wife, handed him his baseball cap before he sang “Angels of Fenway” that recounts the 2004 season when the Red Sox won the World Series.

I am thankful to my Uncle Frank who introduced me to James Taylor and his music many years before. This was an experience that surely was something to pleasure God’s Eye from the song Montana. I am grateful to everyone who made this evening possible.  

Independence College
Jessica Trufant

Like millions of other college students, 45-year-old Matthew Bander schedules his classes around his part-time job.

Bander, who works at a grocery store and takes classes in Quincy and Watertown, is a member of the first class graduating from Independence College, the Massachusetts Developmental Disabilities Council’s pilot program for teenagers and young adults with developmental and intellectual disabilities.

“I’ve learned a lot from it. I enjoyed it,” said Bander, who also serves on the Council. “I’ve learned about basic self-advocacy, how to vote, how to prepare for a job and interviews, all things I never learned before.
The trainers know how to teach a class,” Bander, of Brighton, said. “Bottom line is, it’s very educational.”

The Quincy-based Massachusetts Developmental Disabilities Council is an independent agency, funded by the federal government, which promotes independence and inclusion for people with developmental disabilities. The Council launched Independence College in 2014, and is currently enrolling students for the fall program.

While many educational centers in the state serve the developmentally disabled, Independence College provides a centralized hub for people to build a foundation for life as an adult. Students can then take those basic skills and continue on to other work and training programs.

“It gives people additional options to involve themselves in some sort of education if they don’t receive services, or they just want to learn more skills to help with things like self-esteem,” Lee Larriu, a training coordinator for Independence College, said.

Classes are held throughout eastern Massachusetts. The program includes three phases: a core curriculum, elective options and a practicum that students must complete to graduate. The first group of 20 students is expected to finish this fall.

The required core courses educate students on self-advocacy; recognizing, reporting and responding to abuse; and basic job skills. Elective options include legislative advocacy, voting, making decisions and serving on boards. Larriu said the Council plans to expand the electives.

Finally, students complete a practicum on a topic that interests them and presents it to the Independence College Steering Committee. For example, Larriu said one student is exploring ways to get a bill passed that would help people with traumatic brain injuries.

For more information on Independence College, visit www.mass.gov/mddc.

“If anybody else wants to do it, I would strongly recommend it,” Bander said. “You get a lot of experience in Independence College. You learn a lot and you get to meet a lot of new people.”
This article was originally printed in the Patriot Ledger, written by Jessica Trufant, on 8/4/2015

William “Bill” Conley
Lora Brugnaro and Sarah Foster 

We met with Bill in his open, airy first floor apartment in March 2015. The apartment was welcoming, neat, and simply decorated, a reflection of Bill himself.  This is why we were so happy when Bill enthusiastically agreed to be interviewed for the Consumer’s Voice.  I wanted the Consumer’s Voice readership to join us during our visit with Bill, who represents what it means to welcome others and to advocate for disability rights in a neat, simple way.
Bill was born with cerebral palsy in the 1930’s, an era where doctors earnestly recommended that parents who had a child with a mild to severe disability, place their child in an institution where proper care could be given. Bill’s parents, primarily his mother, refused to take the heartbreaking medical recommendation and opted to take him home.

Home is where he was raised with his brothers and sisters. His parents shuttled Bill back and forth to doctors and hospitals. They did their best to learn the newest treatments for cerebral palsy and made sure he received them. Bill had multiple surgeries at a very young age to lengthen and strengthen his muscles so he could walk. Eventually he did learn, and with the help of crutches from the tender age of five until well in his late 60’s, he walked where he was able.

Bill’s mother died before he was ten years old. By then she had already set the stage for her son to be an anchor for the family and was treated as an equal.  He lived at home with his family until his father passed in his elder years. During these years, aside from medical care, there were not many services available for Bill. There might have been welfare to help fray expenses, but Bill’s father felt he could provide for his family without help.  So when Bill wasn’t at the school for “crippled” children he was home learning how to be as independent as possible.

Bill’s primary schooling was limited, as it was a challenge to get to school because of lack of accessible transportation.  Prior to the Americans with Disabilities Act (ADA) society was not built for accessibility, so Bill had to figure out how to go up and down stairs, over thresholds, and do his house chores on crutches! Eventually all his siblings moved out but Bill stayed home with his dad. There were no accessible housing options in those days, no programs existed to help people with disabilities to live independently.

Bill and folks like him fought for these basic rights for independence. Bill joined task forces and advocated for change. He told everybody he could about what he needed to live independently. He never asked for too much and was always honest about his limits and what it would take to help him overcome these barriers.  He has become one of the strongest advocates and has never raised his voice. Grounded in realism he has achieved what we all want, real lives.

Read Part 2 in the next Consumer’s Voice about Bill’s Advocacy for Independence.     

MILCB Outreach IL Advocate
Remon Jordan

“Your bridge to independence,” is the motto and fundamental belief at the Multi Cultural Independent Living Center of Boston, Inc. (MILCB) in Jamaica Plain, MA.  Our organization promotes self-pride, independent decision-making, self-determination, equal access, and self-help for every consumer.  We are determined to improve the quality of life within the community we serve and create opportunities for people with disabilities to live at their maximum level of independence.

For the past twelve years, we strive to empower our clients by providing critical information that enhances their ability to live independently and function productively within their households and their communities.  We provide multilingual services to people of all ages, disabilities, and their families from diverse populations and cultures throughout the Greater Boston area.  Our staff promote self-advocacy and empowerment by delivering four core services: Information & Referral, Advocacy, Peer Mentoring and Skills Training. All of these services are available free of charge.  Our organization prides itself on maximizing the opportunities of our consumers by forging strong collaborations with other agencies such as Deaf, Inc., Empowering People for Inclusive Communities (EPIC), Easter Seals, and other Independent Living Centers.  Our staff, 80% of whom are people living with disabilities, work diligently to help inform and refer consumers who often need assistance navigating through the various, and often unknown, programs, services, and benefits available to them.  In addition, we are able to effectively advance our mission by concentrating our efforts on helping consumers gain access to affordable housing, health care, assistive technology, and transportation which are constant strains to their independence.

With the challenges and uncertainties faced by people living with disabilities on a day-to-day basis, MCILB remains a dependable connection with opportunities for security and independence. The guiding principles behind MILCB and the Independent Living philosophy as a whole are control, choices, and rights. We welcome the prospect of being a community resource and assisting you with applying these principles to your life, and reaching your desired goals by allowing us to be your bridge.

Boston Celebrates 25th Anniversary of the ADA
Daniela Trammell

On July 22, 2015, over a thousand people descended upon the Boston Common for a community celebration of the 25th anniversary of the passage of the Americans with Disabilities Act of 1990 (ADA). The day was gorgeous and bright, the clear blue sky and beaming sun seemed to beckon folks over to the jubilation to learn more about the event and its purpose.

The celebration was filled with advocates, entertainers, exhibitors, speakers, and vendors all gathered together in the spirit of empowerment and inclusion. Kicking off the day’s scheduled events was a march starting from Boylston Street station and looping around the Boston Common to the main stage located at the corner of Charles and Beacon. The march was a great visual and audible representation of many of the accomplishments of the ADA – access to public spaces (curb cuts, paved sidewalks), access to jobs (seeing people with disabilities represented in different job roles), access to education (students and schools present), and developments in both mobility and sensory technologies. Led by the event’s steering committee, available government officials, and accompanied by the Hot Tamales Band, the crowd of marchers continued the procession with organized groups of youthful and ADA pioneer advocates, and government and community groups.

Once the group of marchers completed the route and gathered at the stage, the celebration transitioned into the formal ceremony. The crowd heard from speakers like special guest speaker Cheri Blauwet, doctor and former wheelchair racer; Carmen Ortiz, U.S. Attorney for the District of Massachusetts; Karyn E. Polito, Massachusetts Lieutenant Governor; Maura Healey, Massachusetts Attorney General; and Felix G. Arroyo, City of Boston Chief of Health and Human Services, on behalf of Mayor Martin Walsh. The crowd even got a chance to see a taped message from U.S. Senator Elizabeth Warren. Once the last speaker finished, the program picked-up with entertainment from poets Lewis Morris, Colin Killick, and Kythryne Aisling; children’s author/poet Remon Jourdan; and musicians Noé Soche and the Berkshire Hills Music Academy.

While the main stage was the focus of the scheduled events, when the program concluded attention focused on the number of disability related vendors exhibiting. Many of the attendees, as well as pedestrians in the Common, made use of the many vendors in one location “A One Stop Shop.” People were able to collect information on products and services, ask questions from people or agencies they work with, and try new activities.

Overall the day was a huge success, it brought together so many people, new friends and old, in the spirit of the ADA. The day honored the past and the accomplishments made, yet looked forward to the future with youthful advocates becoming more involved and committed to advancing the ADA and improving upon current accomplishments. I cannot wait to see what the next 25 years of the ADA will unfold.  Lead On!
 

Upcoming Events:

2015 SRC meeting times:  
All meetings will be held on Tuesdays from:  1:00 pm until 3:30 pm
December 8, 2015, Metro West Region-Morse Institute Public Library


Elaine McHugh, Editor

Contributing Writers
Lora Brugnaro
Sarah Foster
Remon Jordan
Mary Ellen MacRae
Girard Plante
Daniela Trammell
Jessica Turfant

MRC Staff Editor

Sheila Wojdakowski, HR/Customer Relations


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 Elaine McHugh, Editor at the Consumer Involvement Program, at 617-204-3665.

To receive the newsletter electronically, e-mail consumer.involvement@mrc.state.ma.us