Independent Living Resources

04/26/2021

My friends, I have started a site on Patreon. The postings there are stories, essays, photos and drawings—images of my half century in the disability movement.

Support for the site is always welcome—all posts are open to the public with no donation required.

Go to patreon.com and type Christos Palames in the “creators” search field.

This a step back into the world of social media. I withdrew in 2016 out of frustration with the role facebook played in the disastrous election that hear.

Patreon is a membership platform that makes it easy for artists and creators to get paid. Join over 200,000+ creators earning salaries from over 4 million monthly patrons.

01/19/2018

Our Executive Director Chris Palames was recently featured in this wonderful Washington Post article on what connects Americans.

In a time of divisiveness, what connects Americans?

11/21/2015

Our friend Speed Davis died suddenly on Wednesday at his apartment in the Washington D.C. area. He was a gentle man with a fine, subtle sense of humor and a tenacious will. Speed served as an Assistant Director at the Massachusetts Office on Disability before moving on to serve in a number of federal positions. He was a member of the Board of Directors here at ILR for many years. We grieve his loss, salute his indomitable spirit and hold him in our hearts.

08/12/2015

A n**e photo of a young woman recently appeared as an attachment to a post on this site about a meeting of the MassHealth Working Group with senior medicaid administrators. I have no idea how the photo appeared, who the young woman is or where the photo came from. It is discouraging to have a post on an important topic so peculiarly corrupted. I deleted the post as soon as the attachment was brought to my attention, but have had more inquiries since the deletion asking "what's up". Beats me! Hope it never happens again but cyber-space is a strange new world filled with mysteries I'll never decipher.

08/05/2015

On Friday I will be one of three representatives of the CommonHealth Working Group who will be meeting with a senior MassHealth administrator to discuss estate recovery, the fiscal cliff that faces CommmonHealth members unable to work or who decide to stop working (a.k.a. retire), and the counting of spousal income in determining monthly buy-in costs.

I spent the afternoon and evening with my nine year old and two year old grandchildren yesterday which is all the reminder I need to realize how critical the questions we'll be discussing on Friday are for all three generations of my family.

07/08/2015

A small group of MassHealth members have been meeting on line for the past few months to identify weaknesses in the system that threaten us and our families with financial ruin. We''re calling ourselves the CommonHealth Working Group and we've asked for a meeting with ComonHealth administrators to look at three areas of concern: estate recovery, the so calked "marriage tax", and the prohibitive escalation of premiums we'd face if we are ever unable to work.

With Charlie Carr's help, I'll do my best to explain each of these in this space over the next few postings. The bottom line is that those of us with medically complex disabilities are constantly threatened with financial ruin that could push us and our households back into poverty or present a bill after we die for many of the independet living support services we've used since turning fifty-five.

06/30/2015

Old friend Charlie Carr who I met on a hospital ward forty seven years ago, after a stint as our Commissioner of Rehabilitation is now putting the spotlight on some of the critical issues facing the disability community here in Massachusetts. On the top of that agenda - gaping holes in our publicly funded healthcare and personal care assistance programs.

Last week was about banner headlines and sky-rockets in flight. This week it's about getting back to hard, steady work which holds it's own pleasure and reward when done in the good company of a friend like Charlie.

06/27/2015

It was a tidal surge on the shore line of democratic-progress. There haven't been many like it in the last few decades. Mrs. and Mr. Roosevelt and Mr.Lincoln were all done proud, JFK, RFK, LBJ, MLK - especially MLK who was speaking to the mourners in Charleston through the voice of our first African American President.

Change comes agonizingly slowly, and when at long last the moral arc of the universe bends towards Justice, it's wise to keep a weather eye on the forces of reaction gathering for a counter stroke.

06/26/2015

Waiting for the right to marry decision today or Monday, remembering the great day when Massachusetts led the way and the fabulous news footage that followed as LGBTQ couples and families filled the camera lenses with abundant joy. Time for a come one come all national festival of loving commitment!

06/26/2015

The Supreme Court's decision today on Fair Housing kept intact the framework of protection against discrimination that was passed after Dr. King's assassination in Memphis; protections that were extended to people with disabilities and families with children in 1988. The Fair Housing Act Amendments were the prelude, virtually a first title, to the Americans With Disabilities Act enacted two years later in 1990. But a key part of those protections, unlike the Affordable Care Act, was upheld today by only a five to four vote .

06/25/2015

When Elmer Bartels died almost a year ago, he had worked until the last few weeks of his life making extraordinary contributions to the disability community for more than thirty years as Commissioner of Rehabilitation. Still, the Commonwealth of Massachusetts came after his estate to recover hundreds of thousands of dollars for publicly funded health care services. Elmer's last great gift is likely to be how in death he sounded an alarm - like a modern day Paul Revere - that there is a battle to be fought to make real the promise of the Americans With Disabilities Act, the promise of health care reform, nothing less than the full promise of American life.

06/19/2015

Tthe picture at the top of this page is of me with Elmer Bartels at the ADA 20th anniversary celebration on Boston Common, July 26, 2010. Elmer, many years befire, was the first disabled person to reach out to me when I was newly injured and in rehab at the Mass General Hospital. He was a leader in the disability community, not that the term was used in the late 60s when the disability rights movement as we know it today was no more than a distant gleam in the eyes of a few visionary activists.

I don't remeber what Elemer said the day he rolled into my room on the ninth floor of the White Building. I remember him dressed in a blue suit, driving a big power wheelchair with a hand in a metal hand splint pushing the joy stick. He left an impression that led me to seek him out out five years later when fresh from a four month stint at Esalen Institute in Big Sur California I thought my personal mission would be about appropriating body/mind techniques to spinal cord rehab as a supplemnt to traditional Western medicine, That was what I thought Stavros Foundation, my newly minted non profit, named for my brother who had died the year before my own injury, would be about. I'd written a proposal for a "heated, salt water suspension tank", an amalgam of the hot baths in Big Sur and an isolation, sensory deprivation tank, a la new age guru John Lilly.

I visited Elemr at his home, told him my ideas. "That's wierd" was his first reaction, followed by. "You're wierd," after a pause he added, " you need to talk to Fred Fay, he likes that wierd stuff too".

Two of my early memories of Elmer, milestones on the long winding road that took us both to Boston Common that day in 2010 when we sat in the sunshine grinning at each other while Judy snapped our picture..