April 1, 2019
Disability Policy Consortium Weekly Update


Happy April Fools Day.  This weeks lead story was going to begin with a prank on Dennis Heaphy, "Local Advocate Is Appointed By GOP Senate To Draft Their New Response to the Affordable Care Act".  We didn't run with it because these days are so surreal it could a real headline.

So instead, we begin with an editorial by Colin Killick our Deputy Director.  It appears we are going to have to make our voices heard to ensure that the Architectural Access Board has the right to choose their own Executive Director.  For now, the Baker Administration is insisting they, not the AABoard, have the authority to replace Tom Hopkins.

In other news, if you live in Worcester, plan to enjoy a free lunchtime concert from Lisa Thorson on Wednesday.  Lisa is a member of our community, a performer and a jazz voice instructor at Berklee College of Music.
Until next week, happy reading. 

John Winske
Disability Policy Consortium
DPC Editorial:  We Must Act Now to Protect the AAB   

A large part of the work we do as advocates for disability rights involves working to change the law; for instance, to add language to our state's code requiring employee areas to be accessible, or barring discrimination against parents with disabilities in family court, to cite just two bills DPC is supporting this session. The law, however, is only effective when it is followed, and sometimes in the world of politics, language that seems to clearly mean one thing can be interpreted to mean another. This, unfortunately, appears to be happening now with one of the most important disability-related roles in our state government. The law says one thing, and a state agency is doing another.
In January, we lost the great Tom Hopkins, Executive Director of the Massachusetts Architectural Access Board (AAB)-the agency that ensures buildings in our state follow our accessibility laws. In his twenty years leading the board, Tom worked with disability advocate and developers alike, combining passion with pragmatism to find solutions that would make our communities more accessible. His lived experience as a wheelchair user was critical to understanding the importance of access, and to building trust with the community-and that trust started with the way he was hired. Like his predecessor, Tom was chosen for the role by the members of the board themselves. These members, must include people with disabilities and have their expertise on disability issues vetted by the Massachusetts Office on Disability (which itself has now stood leaderless for months). When Tom was hired, therefore, the disability community had a say in who would be leading this agency, and there was some assurance that the person selected would know and care about disability issues. Without this, it seems unlikely that someone with a disability would have gotten the job at all.

The reason Tom was chosen by the board is simple-the law overseeing the AAB clearly states that "the board shall hire" the executive director. The law requires this for a reason-to ensure that the board is independent and can do its job without interference, particularly since it regulates buildings owned and operated by the state itself. However, unlike when Tom was hired, the AAB is now overseen by Division of Professional Licensure (DPL), which otherwise mostly oversees boards that regulate members of certain professions, like chiropractors, barbers, and electricians. And so far, the DPL does not seem to believe that a regulation stating that "the board shall hire" the executive director does not require them to let the board decide who is hired. They apparently feel that to do so would be incompatible with the way they do things.
The job has now been posted online here: AAB ED.  
 The description, which (as far as we know) was not shown to the members of the board or to any disability organization, does not mention disability at all, except in a generic statement that "Females, minorities, veterans, and persons with disabilities are strongly encouraged to apply." (The pay for the position has also been lowered.) Once candidates apply, we don't yet know who will choose them, except that it won't be the board itself. DPL's internal procedures apparently require that there be a hiring committee, and they rejected our suggestion that the board serve as the hiring committee. The agency has indicated that it might be willing to have one or two members of the board be on the committee-better than nothing, but not a majority, and still a far cry from the legal requirement that the board hire the executive director. As it stands, the representatives who come from the disability community, who understand why access matters, could simply be overruled, and our access watchdog could easily become a rubber stamp.
As a community, we must stand up for this vital institution, and insure its independence is protected. If you have a disability, and you're an expert in access regulations, please apply for the job-we need to be sure there are qualified candidates from our community. And no matter who you are, please make it clear to our government that you care about who is hired for this position. Call Governor Baker's office at (617) 725-4005, the Division of Professional Licensure at (617) 727-3074, and Attorney General Healey's office at (617) 727-2200 and tell them you want the members of the access board to be allowed to decide who is picked for this job. Tell them that accessibility matters, and that people with disabilities are experts on our own inclusion. Tell them that the law must be followed, or it means nothing at all.

Colin Killick
Deputy Director, DPC
Net News:  When These Parents Couldn't Find a Wheelchair, They Built One 

This is an old story from the Today Show.  When Evelyn Moore's parents could not find a wheelchair for their toddler, they built one.  You can see the story here.
Net News: Hulu Debuts Shows with Audio Description   

In October, according to Cord Cutters News the streaming service Hulu reached an agreement with the American Council of the Blind (ACB) to release show with a separate audio track containing audio description.  Four shows now contain the audio track, they are:
  • Around the Way
  • Fyre Fraud
  • The Act
  • The Handmaid's Tale
Net News:  Robots Delivering Meals at George Mason University
As many readers know, I am a lover of technology and enjoy thinking about how it can improve the lives of people with disabilities.  When I came across this story in the Washington Post, I was intrigued.  It was about how George Mason University is using robots to deliver dining service meals on campus.  Of course my first thought was these don't look very accessible because the carrier is fairly low to the ground.  But my second thought was, "Oh my God everything will need to be wheelchair accessible."  And finally we have another reason to clear snow and keep paths clear.  You can see the story here.  Let me know what you think. 
Calendar:  Brown Bag Lunch and Jazz with Lisa Thorson in Worcester  

When:  Wednesday, April 3,  Noon - 1:00 P.M.

Where:  Mechanics Hall, Worcester

Jazz vocalist and long time disability advocate Lisa Thorson will be performing at Mechanics Hall as part of the WICN 90.5 FM Brown Bag Lunch Series. 

Catch her live and in person for this free event, or streaming that day on WICN.  Lisa will be performing with Tim Ray, piano David Clark, bbass and George Schuller, drums.  Lisa is a has been performing for many years with the Lisa Thorson Quartet and is a jazz vocal instructor for many years at the Berklee College of Music .   Don't miss this opportunity to celebrate a very talented member of our community.
Calendar:  Askwith Forums - We Are What We Love: What Autism Teaches Us About Identity with Ron Suskind

When:  Tuesday, April 2, 2019, 5:30 P.M. - 7:30 P.M.

Where:  Harvard Graduate School of Education, Longfellow Hall, 13 Appian Way, Cambridge, MA 02138

Speaker: Ron Suskind, Pulitzer Prize-winning journalist; founder, The Affinity Project; author, Life, Animated: A Story of Sidekicks, Heroes, and Autism

Even from infancy, we know what we like. We know what attracts us, what makes us feel good, what makes us curious about the world. And all those likes and dislikes fit together like puzzle pieces, or patches in a crazy quilt to make up our personalities - literally, who we are.

Many people with Autism Spectrum Disorder find their affinities and home in on them with laser-like intensity. They become experts about the topics and the things that they love; for them, that passion is the primary driver of their days. Being able to meet these individuals where they are - to share their enthusiasms for the things that they love - provides a path toward connection, not just for the differently-abled, but for all of us who can share a love for the world outside us and a respect for what lies within the people around us.

Pulitzer Prize-winning, former Wall Street Journal reporter Ron Suskind is the author of six best-selling books. Life, Animated, A Story of Sidekicks, Heroes and Autism, which was adapted into an Academy Award-nominated documentary and recently won the 2018 Emmy for Best Documentary, tells the story of his youngest son, Owen, who, after being diagnosed with autism, found a way to reengage with the world around him through movies. Suskind is founder of The Affinity Project (TAP), which has developed technologies to support neurodiversity and a more humane social media.

This Askwith Forum is being held on World Autism Awareness Day.
Calendar:  ReelAbilities Film Festival

When:  March 26, 2019 - April 3, 2019

Where:  Various venues in and around Boston

The ReelAbilities Film Series is returning to Boston again.  This year, the series will feature 11 films.  The DPC is proud to serve as a copresenter of the film series.  You can learn more about the Boston films here.  
Calendar:  Preserving the Right to Parent: Custody Issues for Survivors with Disabilities  

When:  April 16, 2019, 2:00 P.M. - 3:30 P.M. ET

About this Webinar

Survivors of domestic violence face barriers within the family court and child welfare systems. When a parent is a survivor with a disability, the odds of losing custody of their child(ren) increase exponentially. As of 2012, 35 states still listed disability as grounds for termination of parental rights even without evidence of abuse or neglect. This webinar will provide an overview of some of the unique difficulties survivors with disabilities may face in child custody and welfare cases - and provide suggestions for improvements to the system to ensure that survivors with disabilities are not separated from their children because of their disability.

Presenter:  Robyn Powell

Closed captioning and American Sign Language interpreting will be provided for all webinars in this series. Please note that these features are not available when using the Adobe Connect mobile application. 
Calendar:  Braille Exploration

When:  When: April 16, 18 and 19 2019, 10:00 A.M. - 2:00 P.M.

Location: TBA

For middle and high school students who are blind or low vision

Join Our Space Our Place, Inc. and add another tool to your Independence

Are you curious about Braille?

Have people told you that Braille is something you should learn

Join this Braille Exploration program
  • Learn the alphabet
  • Learn the numbers
    • Learn Grade 1 Braille
    • Explore ways of using Braille in your everyday life
Taught by a certified TVI

Light breakfast and lunch provided.

To register:

Our Space Our Place, Inc.
Phone: (617) 459-4084
email president@ourspaceourplace.org
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