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Independent Living News & Policy from the National Council on Independent Living

Civil Rights & the ADA

NCIL and the Ford Foundation: Partnering to Create an Intersectional Future for the Disability Community

The National Council on Independent Living (NCIL) is pleased to announce our newest partnership with the Ford Foundation that will both support the development of the next generation of disability advocates and enhance our efforts to fully establish Independent Living (IL) as a part of the disability justice movement.

In recent history, there have been substantial changes to the status of disabled people in the United States as a result of the passage of disability rights legislation like the Americans with Disabilities Act (ADA). Yet, as NCIL embarks on our fortieth anniversary, we recognize that, for us, the vital work of disability justice is just beginning. Our movement is at a pivotal point in time, where we have both the wisdom of key historic figures in IL and disability rights to remind us of how far we’ve come and the insight of emerging leaders to show us where we need to go next. The generous grant funding from the Ford Foundation will assist us in getting there in several key ways, including the relaunching of our programming geared towards young disabled people into a multigenerational and intersectional initiative that connects the next generation of decision makers with disabilities with those who have paved the way. 

“The work toward equity requires a diverse disability movement and leadership that centers disability in all forms of injustice,” Rebecca Cokley, Program Officer at the Ford Foundation, remarks. “The Ford Foundation is proud to support NCIL to help build the next generation of grassroots disabled leaders.” 

“I came to here to do exactly what the Ford Foundation is now supporting us to do. I couldn’t be more humbled at the opportunity to serve as leader for this organization during such a turning point for IL and I look forward to seeing what happens next for us,” notes Reyma McCoy McDeid, NCIL’s Executive Director.

The National Council on Independent Living is the longest-running national cross-disability, grassroots organization run by and for people with disabilities. Founded in 1982, NCIL represents thousands of organizations and individuals including: individuals with disabilities, Centers for Independent Living (CILs), Statewide Independent Living Councils (SILCs), and other organizations that advocate for the human and civil rights of people with disabilities throughout the United States.

Since its inception, NCIL has carried out its mission by assisting member CILs and SILCs in building their capacity to promote social change, eliminate disability-based discrimination, and create opportunities for people with disabilities to participate in the legislative process to effect change.

Media Contact:

Jenny Sichel
Program Coordinator

Planet Fitness, Home of the Judgement Free Zone, and the Coalition for Inclusive Fitness Announce Accessible Exercise Equipment Commitment Benefitting People with Disabilities

Hampton, N.H. (September 21, 2021) — Planet Fitness, Inc. (NYSE: PLNT), one of the largest and fastest-growing global franchisors and operators of fitness centers with more members than any other fitness brand, and the Paralyzed Veterans of America, National Council on Independent Living, and American Council of the Blind (collectively “Coalition for Inclusive Fitness” or the “Coalition”) today announced a commitment to expand access to accessible exercise equipment.

“As a leader in the industry and home of the Judgement Free Zone®, it is our mission to provide an inclusive and welcoming environment to anyone who comes through our doors,” said Chris Rondeau, Planet Fitness’ Chief Executive Officer. “People with disabilities face significant barriers when attempting to access health and wellness activities, and it’s clear that health inequity is often due to a lack of access and opportunity. Today’s commitment is another way we are working to eliminate barriers and enhance people’s lives by providing a high-quality fitness experience for everyone.”

The Coalition is focused on working with global organizations to build inclusive health communities that provide people with disabilities equal access to, and opportunities for, healthy living. Planet Fitness is committed to providing inclusive equipment in all new stores and adding it to existing stores across the country as franchise owners replace current offerings, as inclusive commercial grade equipment becomes available for purchase and is approved by Planet Fitness for inclusion in its clubs.

Planet Fitness will enhance the amount and variety of accessible equipment provided at its clubs by adding new inclusive equipment that conforms with ASTM standards as it becomes commercially available for purchase after clearing through a due diligence process, in accordance with set phased-in time parameters.

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NCIL Mourns the Loss of Marilyn Golden

The staff and governing board of the National Council on Independent Living (NCIL) are saddened by the death of our friend and colleague, Marilyn Golden. She was a key figure in the disability rights movement and her tireless work to protect people with disabilities from legislation that could end our lives prematurely has saved countless people from an early death. We join the Independent Living community in mourning this great loss and share the following tribute from the Disability Rights Education & Defense Fund in remembrance of Marilyn.

In Memory of Marilyn Golden

Disability Rights Education & Defense Fund

Marilyn Golden, senior policy analyst for the Disability Rights Education & Defense Fund (DREDF), died at home on September 21, 2021, surrounded by her family. A long-time disability rights advocate, she played a key role in the development, passage, and implementation of the Americans with Disabilities Act of 1990 (ADA). Her advocacy molded and shaped accessibility in the United States and improved architectural access and standards worldwide. She spent more than three decades working to see that the ADA was implemented and enforced, and teaching others the value of disability civil rights via, and beyond the law.

“Working on the ADA was one of the most important experiences of my life,” said Marilyn when asked about the impact and evolution of the ADA in 1999, “and it is something I’ll never forget. Something I treasure and value–to both have such an incredible experience and also to make a contribution.”

And contribute, she did.

From her leadership on both the development and implementation of the ADA, to the unglamourous, nitty gritty details she steadfastly injected into statutory guidance and regulation, to the people she trained and gently mentored every step of the way, our friend and colleague Marilyn Golden changed for the better how we use public spaces, design buses, trains, planes, and boats, and create equitable transit services. She also thought that assisted suicide was dangerous public policy for disabled people and her opposition never faltered, even in the face of powerful forces working for legalization.

NCIL Executive Director Selected for Ibram X. Kendi’s Antibigotry Convening

The National Council on Independent Living (NCIL) is pleased to announce that its Executive Director, Reyma McCoy McDeid, has been selected to serve as a Fellow for Dr. Ibram X. Kendi’s Antibigotry Convening.  Dr. Kendi, author of the best-selling book, How to be an Antiracist, is the founder of the Center for Antiracist Research at Boston University, which is home to the Antibigotry Convening, a program that “aims to define bigotry in structural terms, examine the ways that structural bigotry harms diverse communities, generate an antibigotry policy report, and motivate an antibigotry movement. The project will involve a series of virtual workshops in the Fall of 2021, and will culminate in a virtual symposium in January of 2022.”

As the sole representative of a disability organization to participate in the Antibigotry Convening, Reyma further positions NCIL as a wayshower at the intersection of race and disability.  From Reyma: “This is an incredible opportunity- not only for NCIL, or the disability community, but for society at-large because we are finally starting to see that not meeting the needs of racially marginalized disabled people- either unintentionally or intentionally- is a form of ableism, as discussed by Dr. Kendi and Rebecca Cokley earlier this summer.  For many in IL, this is a way of looking at ableism that might feel unfamiliar.  But, if you’ve ever wondered why your CIL has struggled to engage with racially marginalized consumers, then not understanding how the disability experience for racially marginalized consumers- including how ableism manifests in their lives- may be a part of the issue.  I look forward to taking what I learn during my time as a Fellow with the Antibigotry Convening to further support NCIL’s member network in providing the Core Services to racially marginalized consumers in ways that are transformative- both for consumers, but for IL, as a movement.”

More information on the Antibigotry Convening can be found by visiting the website.

It’s National Disability Voter Registration Week!

The week of September 13-20, 2021 is National Disability Voter Registration Week (NDVRW)! NDVRW was created by the REV UP Campaign to increase the political power of people with disabilities. The REV UP Campaign was created by the American Association of People with Disabilities (AAPD). NCIL is proud to be a partner organization for National Disability Voter Registration Week.

This week, Centers for Independent Living and disability rights organizations around the country will be celebrating NDVRW through events and activities to encourage people with disabilities to vote. There are many ways to get involved!

Check the National Disability Voter Registration Week calendar of events. Organizations around the country will be holding events to celebrate voting all week long. These events include local and state forums, training webinars, voter registration events, and more.

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From Voting Rights to Running for Office: Disability and the Political Process with NCIL’s Executive Director

Dear NCIL Members and Friends,

I was the first openly autistic individual to run for state legislature in US history. I was also the first state legislative candidate to bring up the issue of using campaign funds to pay for caregiver expenses. My Center for Independent Living was in Iowa, where the national political process starts. It starts when the Presidential primaries are held. Voters in Iowa have big meetings and decide on who they think each party should select as their Presidential candidate. These big meetings are called caucuses.  Disabled people in Iowa were not able to participate in these meetings. Our CIL organized meetings so people with all types of disabilities could be a part of the caucuses. 

All this is to say, I came to the National Council on Independent Living (NCIL) with a deep commitment to ensuring that disabled people can participate in all political processes.  

The cornerstone of the political process is the polling place. I am proud that NCIL has, time and time again, shown its support for ensuring that all eligible voters have access and ability to vote on or by election day. 

NCIL operates a subcommittee that focuses specifically on voter rights.  NCIL has an employee who works on projects specific to voting rights. NCIL recently joined several other disability organizations in signing on to a letter authored by the National Disability Rights Network (NDRN) in support of the John Lewis Voting Rights Advancement Act. From the letter:

Following the record-breaking turnout in the 2020 elections, state legislatures across America have released an offensive onslaught of undemocratic legislation designed to specifically suppress the vote of voters with disabilities, voters of color, and youth voters.

These actions were made possible beginning in 2013 when the United States Supreme Court struck down key provisions of the Voting Rights Act (VRA) of 1965 in its Shelby County v. Holder decision; In the Shelby County ruling when the Supreme Court struck down the primary avenue to determine which states require preclearance, it immediately freed jurisdictions with known discriminatory practices to change how their elections are administered without the voter protections offered by federal preclearance… Following the enactment of strict voter identification laws, voter purges, and polling place closures, not all voices are being heard on Election Day, and worse, they are being deliberately silenced.

The American Association of People with Disabilities (AAPD), the National Association of Councils for Developmental Disabilities (NACDD), NCIL, and NDRN strongly urge Congress to protect and restore voting rights in America through the enactment of the John Lewis Voting Rights Advancement Act.

The letter calls out the actions of state legislatures on voting issues. There was a Supreme Court decision in 2013 that made the actions of these states possible. That case was Shelby County v. Holder. It reversed the federal law that made sure states did not discourage people from voting. These protections were especially important for disabled voters, and Black and brown voters. The letter NCIL signed supports the John Lewis Voting Rights Advancement Act.  

NCIL’s commitment to ensuring participation of disabled people in the political process extends beyond the polling place and onto the ballot itself thanks to Elevate, the landmark training program designed specifically for candidates with disabilities, designed and led by people with disabilities. Elevate has been a part of NCIL portfolio for over two years. Elevate’s commitment to operating at the intersection of race and disability has been a key part of the program since day one. Elevate kicks off its relaunch in October. Spread the word. If you are a disabled person who’s interested in running for office, register! It’s FREE for NCIL individual members so be on the lookout for further details from us.

In Solidarity,

Reyma McCoy McDeid

This statement is written in plain language.

A Right to Vote and A Right to Health for All: Co-liberation as the Only Path Forward

By Maddie Offstein, NCIL Summer Policy Intern

Although the U.S. has formally abolished the Jim Crow laws and poll taxes, many states are ramping up efforts to revisit their laws on voting policies and procedures after the 2020 Presidential election and creating significant barriers for many in participating in future elections. Since start of the new year alone, 18 states have enacted 30 new laws that restrict access to the ballot. Most noteworthy is the successfully passed legislation in Georgia, a state whose presidential election results were decided by a mere 11,779 votes. The law, S.B.202, includes 16 key provisions that either restrict the right to vote for some Georgia residents or transfer power from elections officials to state legislators. The major changes to state voting requirements are as follows: a shortened time period to request absentee ballots, stricter ID requirements for absentee ballots, a significant reduction in the number of ballot drop boxes (with an additional requirement that they are placed inside frequently inaccessible buildings), an almost complete elimination of mobile voting centers, and misdemeanor charges for those who offer food or water to those waiting in long polling lines. These changes will have the impact of curtailing voting access for disabled, low-income, and racially marginalized people – so egregiously that the Justice Department is suing the state on the grounds that Republican lawmakers pushed a bill through the State legislature with an intent to deny Black voters equal access to the ballot. In addition to many civil rights groups, disability rights-focused groups such as The Arc Georgia, Georgia ADAPT, and the Georgia Advocacy Office (GAO) have joined the case and added a complaint that S.B. 202 violates both the Americans with Disabilities Act and the Rehabilitation Act of 1973. This is the first-time disability rights organizations have joined, as plaintiffs, a major voting rights lawsuit.

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Last Chance to Sign on to REAADI & DRMA Support Letters: Due this Friday!

Earlier this month, Senator Casey (D-PA) and Congressman Langevin (D-RI) reintroduced the Real Emergency Access for Aging and Disability Inclusion (REAADI) for Disasters Act (S. 2658 / H.R. 4938), and Senator Casey and Congressman Panetta (D-CA) reintroduced the Disaster Relief Medicaid Act (DRMA) (S. 2646 / H.R. 4937). You can find more information about these two critical bills, including information about the bills, previous alerts, our archived Stakeholder Meetings, and our Disability Equity During Disasters toolkit at our REAADI for Disasters Act and DRMA web page.

NCIL is grateful to Senator Casey, Congressman Langevin, and Congressman Panetta for taking the lead on these important bills that will help address and dismantle the barriers disabled people face before, during, and after disasters. We will be sending letters expressing our strong support for these efforts, and the dire need for the REAADI for Disasters Act and DRMA to be passed and implemented quickly.

Please join these sign-on letters expressing your organization’s strong support for these bills and thanking Senator Casey, Congressman Langevin, and Congressman Panetta for their leadership!

Sign your organization on to our REAADI for Disasters Act & DRMA Support Letters!

If this form is not accessible to you, or if you have any questions, you can email with:

  • your organization’s name exactly as you would like it listed
  • whether you are a national, state, or local organization
  • what state you are in (if state or local)
  • and your preferred email address (for internal purposes only)

Join us for a REAADI & DRMA Disability Community Stakeholder Call This Friday!

NCIL is excited by last week’s reintroduction of the Real Emergency Access for Aging and Disability Inclusion (REAADI) for Disasters Act (S. 2658 / H.R. 4938) and the Disaster Relief Medicaid Act (DRMA) (S. 2646 / H.R. 4937). The REAADI for Disasters Act and DRMA are two essential bills that will help address and dismantle the barriers disabled people face before, during, and after disasters.

In an effort to coordinate advocacy efforts and drum up support for these critical bills, NCIL held two stakeholder calls for the Independent Living network earlier this week. On these calls, NCIL, Congressional representatives, and invited guests celebrated the reintroductions and discussed the many ways to take action to get the REAADI for Disasters Act and DRMA passed into law.

Next week, NCIL will be hold another stakeholder call for members of the disability community outside the Independent Living network. On this call, attendees will have the opportunity to hear from speakers from a range of disability organizations about their disaster-related efforts, how engaging their disabled consumers / constituents made their efforts more successful, and how they plan to fight for the REAADI for Disasters Act and DRMA. Attendees will learn about opportunities for collaboration and will have the opportunity to ask questions. We hope you will join this call, and please feel free to forward the information about this call to others who may be interested!

The Disability Community Stakeholder Call will be on Friday, August 20, 11:00 a.m. – 12:00 p.m. Eastern. The call will be held as a Zoom webinar. ASL interpreting will be provided. CART captioning will be available in the Zoom platform and at a separate Streamtext link. Please email if you have any questions or need any other accommodations. Please submit requests for other accommodations at least 24 hours before the event.

The Disproportionate Impact of Vaccine Mandates on Disabled People

By Hanalei Steinhart, NCIL Summer Policy Intern

The United States has recently seen a nationwide resurgence of Covid-19 alongside a push to return to in person work. Many people feel safe to do so as they have been vaccinated, however, insufficient people have been vaccinated to slow the spread of Covid-19. The continued spread of Covid-19 and its variants endangers disabled people who are unable to get vaccinated or will not gain immunity from a vaccination. Many authorities are implementing vaccine mandates to address the continued spread of disease. However, vaccine mandates disproportionately impact people who cannot get vaccinated or are unlikely to develop immunity. Vaccine mandates also force disclosure of disabilities or other medical conditions which may lead to an increase in discrimination.

There are multiple groups of people who have refused vaccination or are unable to get vaccinated. Some of those people are those typically termed “anti vaxxers” who refuse all vaccinations for a variety of reasons including political or religious ones. Others are hesitant about getting a vaccine for a variety of reasons such as African Americans concerned about the government’s history of medical abuse and experimentation in the US. Another group who has often been overlooked are those people who are unlikely to develop immunity from the vaccine. Lastly, some people are unable to get vaccinated for medical reasons. The refusal of those who are eligible and able to get vaccinated has led to an increased spread of Covid-19 that disproportionately impacts the lives of disabled people.

Herd immunity is based on the principle that when a sufficient number of community members are vaccinated, a disease no longer has enough susceptible people to let it travel through the community (Mayo Clinic). This protects the few that are unvaccinated because they are unlikely to encounter the disease. A vaccine mandate is a tool to protect people who cannot be vaccinated. It is issued by a relevant authority and requires individuals to either provide authentic proof of vaccination or disclose their reason for not being vaccinated (CDC).

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