Never Forget: May Their Memories be a Blessing

I’m turning forty-next year. A 40th birthday is a major milestone for anyone but as a person with a disability I am acutely aware of the possibilities and fragility of life. I have lost many friends and admired disability rights leaders over the last several years. Loss is sadly all too common in our community. Experiencing loss shapes my view of the world. I live life with an ever-present shadow that makes me aware of my accomplishments and embrace life with a sense urgency to leave nothing unsaid or dreams unfulfilled. I have felt a sense of urgency to make sure the accomplishments of my friends aren’t forgotten. Our community is not traditionally celebrated like other community leaders. We do not have a video of in memoriam like they do annually at the Oscars. I want my son to know the impact these people have had on the world. Below is my gift to my son and in respect and gratitude to the leaders that have come before me — may their memories be a blessing.

                                                Never Forget Your Friends

Let me tell you about some of mommy’s friends that made life better for you and me. They have made sure that people with disabilities can be who ever they want to be.

First let me tell you about Ed, when he was a student at University of California at Berkley, people told him he couldn’t live where all the other students wanted to be.   Ed and others thought that wasn’t right.  So he help start a movement known today, as Independent Living and it spread across the USA.

Now people all over the world say that people with disabilities should have the same rights, to live, and to work, and to have civil rights.  Ed was not the first, and he won’t be the last, of people who made life better for you and for me.  So let me tell you about a few people and what they meant to me.

Paul was a friend that mommy held dear.  He was a teacher at a big University. He documented our history.  He wrote many books and told stories to all about how people with disabilities could do it all.

My friend Laurie was a very nice lady too.  She worked with mommy a long time ago at a center where people with disabilities go.  Community Access Living is what it is called where people like mommy can go and get help, to learn where to find housing and use the bus, or just hang out with people just like us.   Laurie was a mommy before me and she helped mommy learn how amazing it could be.

Richard was funny, as funny can be.  Richard made sure all people could use buses and trains and planes, working for the Department of Transportation he helped us get where we needed to go.  He also helped us in an emergency; to make sure people are protected no matter what their ability.

My friend Greg was the man with the smooth voice.  Who had his own radio show, to tell everyone how people with disabilities Roll. Mommy loved hearing the stories everyone told. Then one day Greg asks me to be on the radio.  Mommy was scared and spoke way to fast but I was proud to use my voice at last.  Greg helped mommy feel part of a community and help me discover who I wanted to be.

My friend Jamie is the next person I want to say everyone should remember her work in a special way.  Jamie worked for a new agency, Administration on Community Living, where President Obama had all programs go, to help people with disabilities thrive and to grow. Jamie worked with mommy to improve long-term care and tell people everywhere we need quality health care.

Catherine was a lady who loved you very much.  She loved all babies and children oh so much.  She was a great leader who helped people with disabilities get jobs, including actors with disabilities, so Hollywood would know we are in charge.  She cofounded YLF, mentoring students with disabilities, so they could become the leaders they wanted to be.

Scott was man always on the go.  He travelled the world, far and wide, helping to make sure we all had pride.  He changed the travel industry and made sure we could go to all the fun places where people wanted to be.

My friend Larry fought for our rights the only way a lawyer can fight. He founded a firm called DRA that made sure companies and cities would pay, for things they should be doing, but don’t anyway.  That little ramp that helps us go from street to street, Larry helped make sure those were complete.  He made sure friends can read books, even on- line, o my dear children as you go to sleep tonight, always remember to hug all your friends tight. Tell your friends why you love them so much and why they make life better for all of us.everyone can go to movies and we can vote anywhere, every time.

These are some people that meant a lot to me, that made our lives better for you and for me. So my dear children as you go to sleep tonight, always remember to hug all your friends tight. Tell your friends why you love them so much and why they make life better for all of us.


Through this blog I hope to explore my joy and struggles of learning to be a mom. Along the way I will share some of my stories as a mom with a disability, not for pity, not to be an inspiration but because it is a fundamental part of me. I am a spastic mom that frequently spills milk and rebels against the notion of “Leaning In.” I prefer to recline with a cup of tea!

2 thoughts on “Never Forget: May Their Memories be a Blessing

  1. The advocates I mentioned above are just a few wonderful people we have lost over the last several years. The ones I mentioned are people I personally have known. Other leaders include :

    Barbara Faye Waxman-Fiduccia, was the creator and director of the Americans with Disabilities Act and Reproductive Health Project through the Family Planning Council in California as well one of the leading earlier scholars on disability and sexuality. also see;
    Daniel Fiduccia
    John Belluso
    Douglas Martin
    Harriet McBryde Johnson
    Laura Hershey
    Stella Young
    Thru Phan
    Leslie Simon
    Michael Pachovas
    Paul James Church…/remembering-disability…/
    James Brooks…/r2X3xwu4hsxMlT…/story.html
    Dr Gerrie Hawkins…/ncd-celebrates-life-and-legacy-dr…
    Where possible (but not always possible in every case) I specifically tried to post links to the work they did rather than how they died. To often our bodies are the focus of our public lives and I wanted it to not to be the focus of their death. We should remember them for how they lived and the impact they had on the world. However, all to often as people with disabilities we are expected to “earn” our place in the world to demonstrate how extordinary we are to “over come our disability.” My post is meant to show how everyday people can impact the world and how collectively this changes the direction of history and as a result has a impact on how people live, work and are active participants in the community. To me this is what these individals and many others not on this list have done. We should remember them as part of our collective community history.

    These of course are just a few of the many many other individuals not on this list. Please feel free to list others you have known.


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