The National Disability Museum Concept Is Alive Again!

Aloha from Hawaii! 

It has been awhile, I know. 

In the spring of 2018, after hearing Lonnie Bunch (now head of the Smithsonian) speak about the challenges of establishing the African American Museum, I wrote two blog posts on the need for a disability museum on the national Mall. That idea did not gain visible traction again until the death of Judith Huemann, a friend to many and a national/international advocate for disability rights, in the spring of this year.

Now things are really hopping! There are two groups working on the museum concept.  Neither group has a formal name yet. One group, the small one, is focused on the necessary steps to get to a brick and mortar national museum. It is working on legislation to authorize a commission to recommend on the feasibility and approach to creating a national museum on disability history and culture. 

The other group, the big one, is focused on all aspects of collecting, cataloging, and otherwise curating materials for disability exhibits, and eventually the creation of a national museum. Currently it wants to foster and help others to consider, build, and share exhibits throughout the country, including local museums, regional museums, and the Smithsonian, with emphasis on educating others about the importance of disability rights. 

I am participating in both groups.

It has been fascinating to be involved in this process. The larger group, which may have a listserv of more than 400 people at this point, was started in March 2023. It has had five meetings. The attendance at the first few meetings was impressive, but, according to one participant at today’s meeting only 19 people participated. A great deal of time has been spent in these large group meetings discussing how to maximize access for anyone and everyone with disabilities and on how to attract the broadest diversity of people with disabilities. These two priorities have left less time to discuss and decide structure and designate people to leadership roles. 

I have never observed such an organic process. I fear, however, without a name, leadership, and organization, this admirable effort may dissipate or break into smaller groups over the next year. So much energy, enthusiasm, and effort has been generated and they need to be sustained and grow.  This will happen if they are channeled and directed. This won’t happen without structure and leadership. 

Based on what I have heard and observed so far, full accessibility and broad diversity will be clearly reflected priorities in any organization adopted and any leadership designated. By their nature, access and diversity will always need tending, but right now we need to address organization and designate leaders.

This summer, the smaller group will be reaching out to disability and museum sources/experts to join a steering committee to oversee promotion and realization of legislation that would authorize the commission to advise on a museum on disability history and culture. The commission option appears to be the first step on the path to create any national museum for any population.

I will be writing more about the efforts of both the small group and large group as the year progresses. I hope you too will decide to help by tracking what develops and alerting your contacts. A national museum on disability is a big deal and long overdue. Disability intersects with each and every category of human beings. We need to identify, collect, and organize the disability experience, the good, the bad, and ugly, and preserve it so today’s and future generations can learn from it.

Here the larger group’s communications link: disability-rights-museum@googlegroups.com 

The smaller group does not yet have a public link. I will keep you apprised of its actions through my blog.

Thank you.

Pat Morrissey (aka: Common Grounder)

Judy Heumann, 1947-2023

 Yesterday Judy Heumann officially acquired angel status.

Judy always knew what the right thing was to do. But she also knew, it would take more than one person to make something right to happen. She was a human Rolodex, the best connector of others, and the best button pusher to make right things come about.

She was super human. I’m not sure that she ever slept. She would call people at all times of the day and at night. Sometimes just to see how they were feeling, but often also to motivate them. 

Her geo-political reach was unmatched in the disability rights arena. She had genuine relationships with disability advocates across the globe. They knew when Judy called, texted, or sent an email it was for a good reason and they were committed to action. 

She had the best intuitive sense of why certain people needed to get to know each other. Perhaps for personal growth, but more likely to combine forces to bring about needed change. 

She knew that for disability rights to be understood and to flourish younger generations needed to be nurtured and included. So many young people saw Judy as a mentor and friend. 

She had vast audiences and platforms. She recognized educating others about disability rights was an incremental process. She realized words alone were not enough, books alone were not enough. She saw the timely value in public speaking, social media, blogs, documentaries, and film. 

She wanted legislation to create a permanent disability advisor in the State Department, with staff, money, and clout to become law, but it did not. 

Now is our turn to act. To honor Judy and give traction to her energy, passion, and legacy, let’s get that legislation passed. Judy is above us now, watching over us. Let’s not let her down. Reach out to all Members of Congress to pass the legislation quickly to honor Judy Heumann and provide a catalyst for what she so tirelessly fought. 

When Judy was in a room the electricity was palpable. When Judy was on a zoom call, ears waited for Judy to speak. Brains waited to process what she said. 

Though we no longer have direct access to her wisdom, we know what we need to say and do. 

Remind others that disability rights is nonpartisan, that access without meaningful inclusion is of marginal value, and that planning anything without people with disabilities at the table is not smart and likely, costly. 

We will miss Judy. She does not want tears. She wants action.

Pat Morrissey