Category: Disability Rights

Despite Section 504 being signed into law by President Richard Nixon, Section 504 was not enforced for four years. This was in large part due to businesses and organizations lobbying against implementation, arguing that it was burdensome and unfair to expect them to implement accessibility or lose federal funding. 

One of the 504 Sit-in participants Corbett Joan O’Toole shared, “At that time in history, there was simply no access—no right to an education, no public transit. You couldn’t get into a library or city hall, much less a courtroom.” Disabled people wanted to see the government committed to disability inclusion and access. The disabled activists warned that if Joseph A. Califano Jr., who served as the Secretary of Health, Education, and Welfare (HEW) during President Jimmy Carter’s administration, didn’t take action by April 4th, nationwide protests would ensue. 

On April 4th, 1977, after the government did not sign the regulations into law, protests took place all over the country. In San Francisco, over 500 disabled individuals and their allies attended a rally on San Francisco’s Civic Center Plaza. Most of the protests happening across the country ended that day. But after the San Francisco rally, nearly 150 people with disabilities streamed into the HEW Federal Building and over 120 activists occupied the building, and refused to leave until their demands were met, even when threatened with arrest and eviction. 

Government officials attempted to remove the activists from the building by cutting the phone lines and denying them food, water, medicine, and more. But the disabled protestors used sign language to communicate through the windows of the building to work with allied groups to get food, medicine, blankets, and more.  Support came from a wide range of organizations and individuals, including labor unions, religious groups, civil rights activists, and the Black Panthers.

After two weeks of protesting, a group of Sit-in activists journeyed to Washington D.C. to intensify their efforts against Califano. They organized candlelight vigils outside of his residence and attempted to enter his office building by forcefully pushing their wheelchairs against the doors when their request for entry was denied. While in the capitol, Judy Heumann addressed congressional representatives and reporters:

“I can tell you that every time you raise issues of ‘separate but equal,’ the outrage of disabled individuals across this country is going to . . . be ignited. There will be more takeovers of buildings until finally maybe you begin to understand our position. We will no longer allow the government to oppress disabled individuals. We want the law enforced.” 

After 28 days of the Sit-in and consistent pressure from the protestors, Califano finally signed Section 504 regulations. This protest also helped pave the way for the Americans with Disabilities Act of 1990 which expanded disability rights protections to the private sector and State and local governments. 

As Kitty Cone shares, the Sit-ins were “the public birth of the disability rights movement. . . For the first time, disability really was looked at as an issue of civil rights rather than an issue of charity and rehabilitation at best, pity at worst.”

Today, the legacy of the 504 Sit-in lives on, as people with disabilities continue to fight for equal access and accommodations in all aspects of society. The protest was a powerful reminder of the importance of standing up for one’s rights and fighting for change, even in the face of adversity. 

This post is a condensed version of a blog post by Maddie Crowley. “Disability History: The 1977 504 Sit-In,” https://disabilityrightsflorida.org/blog/entry/504-sit-in-history. It is republished with permission from the author and Disability Rights Florida.

I worked with both Linda and Sharon—and other beneficiaries—trying to piece together records that might account for the overpayments that racked up when they temporarily returned to work and the SSA continued to make benefit payments. The SSA is notorious for waiting years before sending overpayment letters. In the meantime, the benefit amounts received were spent and records were lost. After spending time with some of these beneficiaries, I found that locating copies of letters—the ones beneficiaries said they sent the SSA reporting the times they returned to work—was a lost cause.

I typically settled on a practical solution and made Requests for Waiver of Overpayment Recovery or a Change in the Repayment Rate. An SSA-contracted benefits consultant was skeptical about the SSA’s willingness to reduce the monthly repayment amount any lower than $75 a month. He marveled when I negotiated $50 per month withholding for Linda and $25 for Sharon.

            Almost 15 years later—under the direction of newly appointed Commissioner of Social Security, Martin O’Malley—the SSA announced that, effective March 25, 2024, it will decrease the default overpayment withholding rate for Social Security beneficiaries to ten percent (or $10, whichever is greater) from 100 percent. The goal is to ensure SSA overpayment policies are fair, equitable, and do not unduly harm anyone. O’Malley described it as “unconscionable that someone would find themselves facing homelessness or unable to pay bills, because Social Security withheld their entire payment for recovery of an overpayment.” (Limited exceptions to this change, such as when an overpayment resulted from fraud.)

The change applies to new overpayments.  If beneficiaries already have an overpayment withholding rate greater than ten percent and want a lower recovery rate, they too should call the SSA at 1-800-772-1213 or their local SSA office to speak with a representative.

Beneficiaries retain the right to appeal the overpayment decision or the amount.  They can ask the SSA to waive collection of the overpayment, if they believe it was not their fault and can’t afford to pay it back.

And O’Malley has brought even more good news. The burden of proof for a clawback of an overpayment will shift from the beneficiary to the SSA! Oh how Linda and Sharon would have benefited from this rule. And other reforms are being considered, such as a statute of limitations on clawbacks.

This post is based on a condensed version of Chapter 19, Social Security Benefits Representation in “ALWAYS AN ADVOCATE[MOU1] : Champions of Change for People with Dwarfism and Disabilities” by Angela Muir Van Etten and a March 29, 2024 announcement by Jeffrey Buckner, Acting Deputy Commissioner for Communications, reducing the Overpayment Recovery Rate to 10 Percent.

1. Dignity and Respect

Although passengers shouldn’t be forced to accept special services or subjected to restrictions not imposed on other passengers, asking for early check-in, advanced notice or documentation, or pre-boarding to receive certain disability-related services is permitted.

2. Information About Available Services and Aircraft Capabilities and Limitations

The information must be specific to the aircraft scheduled for the flight, unless unfeasible, and include accommodation limitations involving level-entry boarding, aircraft storage, and accessible lavatories, for example.

3. Information in an Accessible Format

Aircraft size, passenger counts, and installation dates affect access requirements for websites and automated kiosks. Passengers who identify as needing visual or hearing assistance must receive prompt access to the same trip information as other passengers.

4. Accessible Airport Facilities

An accessible route between the gate and aircraft boarding location is required. When level-entry boarding is unavailable, ramps or mechanical lifts must service most flights. Service animal airport relief areas are also required.

5. Assistance at Airports

Trained airline personnel must provide timely enplaning and deplaning help using wheelchairs, accessible motorized carts, and ramps or lifts to move to and from the curb to departing or arriving flights, between gates, and to baggage claim or a restroom entrance.

6. Assistance on the Aircraft

If passengers self-identify as needing additional time or assistance to board, stow accessibility equipment, or be seated they must be allowed to board before all other passengers. On board help includes moving to and from seats or the lavatory and stowing and retrieving carry-on items.

7. Travel with an Assistive Device or Service Animal

Assistive devices typically count as free cabin carry-ons. Wheelchairs must be transported subject to safety, security, and size requirements. Compensation is required for lost, damaged, or destroyed wheelchairs or assistive devices. Service dogs may accompany passengers unless exceptions apply.

8. Seating Accommodations

Seats with a movable aisle armrest, space for a service animal, more leg room, or adjoining a personal care assistant must be given to passengers who identify to airline personnel if the seat exists on the same class of service.

9. Accessible Aircraft Features

New aircraft delivered after designated dates must comply with standards for movable aisle armrests, priority in-cabin wheelchair stowage space, accessible lavatories, and on-board wheelchairs.

10. Resolution of Disability-Related Issue

An expert Complaint Resolution Official must be available to resolve disability-related issues, including on the spot decisions. Passenger complaint procedures are outlined for airlines and applicable federal agencies.

You may also want to read:

• “Airline Passengers with Disabilities Bill of Rights.” United States Department of Transportation. July 26, 2022. https://www.transportation.gov/airconsumer/disabilitybillofrights
• Angela Muir Van Etten. “Air Travel Shocks.” Blog post. November 14, 2022. https://angelamuirvanetten.com/air-travel-shocks/
• Angela Muir Van Etten. “Add Teeth Not Candles for Birthday of Air Carrier Access Act.” Blog post. October 3, 2022. https://angelamuirvanetten.com/air-carrier-access-act/
• Angela Muir Van Etten. “Tired of Waiting In Airports?” Blog post. March 1, 2021. https://angelamuirvanetten.com/tired-of-waiting-in-airports/
• Angela Muir Van Etten. “Which Animals Fly for Free?” Blog post. January 11, 2021. https://angelamuirvanetten.com/which-animals-fly-for-free/

As expected, a statement of Patient Rights and Responsibilities provides for nondiscriminatory care regardless of classification in a protected class like age, race, socioeconomic status, religion, or disability. Surprisingly I found introductory text (not part of the Patient’s Rights statement) limiting patient protections to those who are “sick or injured” and referring to disabilities as “challenges”—an inaccurate euphemism shading disability as a problem to overcome.

Robert’s rights were mostly respected during his stay as shown below:

• His refusal to allow an ER doctor to insert an IV in the bone of his upper arm was accepted.
• His interest in pastoral care was documented when he was being processed for hospital admission. As a result, he was visited by both his own church pastor and the hospital chaplain.
• Communication between Robert and health care staff was facilitated by ensuring that he had access to his hearing aids.
• The reasons for his transfer from a regular room to the Progressive Care Unit, staffed by ICU nurses, was explained.
• He was informed and participated in decisions affecting his care, health status, services and treatment.
• He was permitted to choose his spouse to assist him in care, treatment, and service decisions.
• He was told what he needed to know about his health condition after hospital discharge.

However, the following rights were disrespected:

• A hospital doctor did not inform Robert of the risks associated with inserting an IV in a vein in his upper arm in the location that might be needed for future kidney dialysis treatments. This was especially egregious given that Robert has stage four kidney disease and his treating physician would not have agreed to using this vein.
• A nurse threatened the equivalent of a physical restraint when she chastised Robert for exiting a recliner chair without staff supervision. She treated Robert like a child when she threatened the consequence of putting him back in bed so that he couldn’t get up independently. Her issue was more about a staffing shortage than safety!
• Individual dignity was trashed when he had to lay in his own excrement for an extended period of time after being plied with laxatives and a suppository.

Finally, even though Robert had a say in who could visit him, an out-of-reach handset prevented his wife from calling to request entry into the ICU. A Bill of Rights should provide accessibility to a patient’s disabled visitors.

Please share how well your rights as a patient have been protected.

You may also want to read:

• Bill of Rights. 1791. https://www.law.cornell.edu/constitution/billofrights
• Florida Patient Rights and Responsibilities. Cleveland Clinic. 2023. https://my.clevelandclinic.org/about/website/patients-rights-responsibilities#florida-patient-rights-tab
• Patient Rights and Responsibilities. Cleveland Clinic Martin Health. November 2020. https://my.clevelandclinic.org/-/scassets/files/org/about/patient-rights-responsibilities/florida-patient-rights-and-responsibilities-english.pdf?la=en
• Angela Muir Van Etten. “My Path to Citizenship.” Blog post. December 18, 2022. https://angelamuirvanetten.com/my-path-to-citizenship/

class action case, Mills vs. Board of Education, District of Columbia, claimed that the Defendants denied students with various disabilities access to publicly funded education with no alternative placement. The court ruled for the Plaintiffs—348 F. Supp. 866, 871 (D.C. Cir. 1972) on August 1, 1972—and followed Brown v. Board of Education, 347 U.S. 483, 493 (1954) in finding that public education is “a right which must be made available to all on equal terms.”

IDEA is a monumental piece of legislation that changed the course of history for students with disabilities. It guarantees a free appropriate public education in the least restrictive environment to children with the disabilities listed in 34 CFR § 300.8(a)(1)—impairments involving the intellect, hearing, speech or language, vision, an “emotional disturbance,” orthopedic, autism, traumatic brain injury, other health impairment, a specific learning disability, deaf-blindness, or multiple disabilities—who, by reason thereof, need special education and related services.

Before IDEA, federal law did not require American schools to accommodate students with disabilities, and many disabled students received little to no education. The same scenario played out for Little People where I grew up in New Zealand. For example, Lillian was not sent to school until she was nine years old, and then for only six years. Danielle dropped out at age 12. Both were academically capable of completing a full education program, but because of their short stature they were denied this opportunity. Indeed, the paternal decision not to advance Danielle from elementary to high school was intended to protect her from teasing.

I am grateful for a totally different educational experience. At age five, I was mainstreamed in public school with other kids my age. There was no reason not to. My size did not affect my ability or intelligence. Physical limitations could be accommodated and dealing with the teasing of other children was something I would have to learn sooner or later.

I also appreciate that the accommodations I received did not separate me from other kids. For example, in 12^th grade, my teacher found a creative way to include me in our geography field trip to a farm. She first considered a horse as my transport, but decided it would be too much for the horse! I was the envy of every kid in the class when Alan, a boy in my class, was co-opted to ride me around the farm on his trail bike.

So how does your experience with special education encourage this celebration?

You may also want to read:

• Angela Muir Van Etten. “From Minus one Million to Plus Seven Million.” Blog post. December 7, 2020. https://angelamuirvanetten.com/from-minus-one-million-to-plus-seven-million/
• Angela Muir Van Etten. “Always an Advocate,” Chapter 20, Special Education for Students with Disabilities. October 2021. https://angelamuirvanetten.com/always-an-advocate/

• Angela Muir Van Etten. “Dwarfs Don’t Live in Doll Houses,” Chapter 2, Educated. May 1988. https://angelamuirvanetten.com/dwarfs-dont-live-in-doll-houses/

Under a lesser known provision, States and local governments can receive payments to make polling places accessible to individuals with disabilities and train election officials, poll workers, and volunteers on how best to promote access and participation of people with disabilities in federal elections. (Discussed in Chapter 17 of my book, Always an Advocate, https://angelamuirvanetten.com/always-an-advocate/.)

But none of these reforms winnow the field to the candidate that will truly represent the interests of their constituency. Even though candidates bend over backwards to identify with potential voters by sharing details of their family, education, employment, gender, and race, how many candidates identify with disability? Very few. So let’s add another help to encourage people with disabilities to vote—more candidates with disability lived experience.

This post shares details of four people with dwarfism who serve as candidate role models.

Lee Kitchens—a dwarf with Spondyloepiphyseal Dysplasia—was a two-term alderman and five-term mayor of Ransom Canyon, Texas where City Hall is situated on 24 Lee Kitchens Drive! His Bachelor of Science in Electrical Engineering took him to a distinguished career with Texas Instruments and teaching at Texas Tech University. He twice served as Little People of America President and co-founded the Coalition of Texans with Disabilities.

Joe Roach—a dwarf with Achondroplasia—a three-term Houston city councilor, was the first dwarf elected to office in a major American city. Prior to his election, Joe was an acclaimed prosecutor in the Harris County District Attorney’s Office. He wanted to be known as a good council member or a bad council member not as a “Republican midget,” as an affirmative action program manager called him; she was rebuked with a 3-day suspension without pay.

Tony Soares—a dwarf with Achondroplasia—served on the Hoboken, New Jersey, City Council for eight years. He was elected while working as an advertising executive and defeated an opponent who didn’t take him seriously. He founded and led Hoboken’s Reform movement and won respect for his persuasiveness. After stepping aside from a mayoral race, one supporter later imagined Hoboken with Mayor Soares leading it instead of the “unqualified idiots” who served after him.

James Lusted—a 43-inch dwarf with Diastrophic Dysplasia—is the first dwarf councilor elected in the United Kingdom. He represents Rhos-on-Sea, on the Conwy County Borough Council in North Wales. This actor and TV presenter is a member of the Dwarf Sports Association and carried the Olympic torch through his hometown. His appointment as the Leader’s Disability Champion gives him a nationwide platform to encourage the participation of people with disabilities in public life.

How about you? Are you brave enough to throw your hat in the ring?

On September 25, 2008, President George W. Bush signed the ADA Amendments Act of 2008 (ADAAA) 18 years after his father, President George H. W. Bush, signed the ADA. The amendment was necessary because the Supreme Court of the United States (SCOTUS) perception of disability under the ADA was too narrow. The ADAAA overrides past SCOTUS interpretations decreeing that the disability definition should be construed broadly to make it easier for individuals to establish they have a protected disability.

So what is the criteria for showing that dwarfism is covered under the ADAAA? A “yes” answer to any one of the following three questions means you’re protected.

• Do you have an impairment that substantially limits one or more major life activities?
• Do you have a record of such an impairment?
• Are you regarded as having an impairment even though you don’t?

It’s not about a diagnosis, but rather whether an impairment substantially limits the ability of an individual to perform a major life activity as compared to most people in the general population. This requires an individualized assessment.

The ADAAA (42 U.S.C. § 12102) and regulations of the United States Department of Justice (28 C.F.R. §§35.108, 36.105) and Equal Employment Opportunity Commission (EEOC, 29 C.F.R. § 1630.2) spell out how the disability definition should be construed. Non exhaustive lists define “physical or mental impairment,” “substantially limits,” and “major life activities.” As a little person with Larsen’s Syndrome I can pick pertinent traits from these lists to demonstrate my disability under the ADAAA. For instance, my physiological disorder (1) affects my musculoskeletal, respiratory, and cardiovascular body systems; (2) substantially limits my major life activities of walking, sleeping, standing, reaching, lifting, bending, breathing; and (3) affects normal cell growth. People with dwarfism and other disabilities can also pick from these lists to show how they meet the ADAAA disability definition.

Thankfully many people with dwarfism have qualified for ADAAA protection. Here are a few examples:

• An applicant was compensated $20,000 after being denied a purchasing manager position because he didn’t have a driver’s license even though having a license was not an essential job function. United States vs. York County, South Carolina (2019).
• A nine year old boy received compensatory damages from a youth wrestling league that failed to modify their policy to allow him to “play down” one age division so he could compete with wrestlers closer to his weight and size. B.K. vs. Pikes Peak Wrestling League (2016). 
• Starbucks agreed to pay $75,000 to a trainee after denying a reasonable accommodation during training and then refusing to hire her (2012).

So let’s reframe the question. Are YOU disabled under the ADAAA? Check the regulations (cited above) to find out.

You may also want to read other ADA blog posts by Angela Muir Van Etten:

• “Defendants Feign Ignorance When Hit With ADA Complaints.” January 30, 2023. https://angelamuirvanetten.com/defendants-feign-ignorance-when-hit-with-ada-complaints/
• “Public Participation ADA Violation.” January 23, 2023. https://angelamuirvanetten.com/public-participation-ada-violation/
• “ADA and Taxi/Rideshare Services.” July 25, 2022. https://angelamuirvanetten.com/ada-and-taxi-rideshare-services/
• “Take Action Against ADA Access Violations.” January 24, 2022. https://angelamuirvanetten.com/take-action-against-ada-access-violations/
• “ADA Compliance Challenge Continues.” January 25, 2021. https://angelamuirvanetten.com/ada-compliance-challenge-continues/  
• “ADA 30-year Milestone.” August 3, 2020. https://angelamuirvanetten.com/lift-on-bus/

Employment note:

Under its affirmative action rules, the EEOC treats dwarfism as a targeted disability because dwarfs face significant barriers to employment, above and beyond the barriers faced by people with the broader range of disabilities, see “Questions & Answers: The EEOC’s Final Rule on Affirmative Action for People with Disabilities in Federal Employment.” January 3, 2017. https://www.eeoc.gov/laws/guidance/questions-answers-eeocs-final-rule-affirmative-action-people-disabilities-federal