Adversity isn’t an unknown to many people with disabilities; who often face physical barriers, social stigma, and unjust policies in their daily life. In the beginning of the civil rights movement, the lack of accessibility in our architecture, and the eugenics movement in the U.S were two prominent issues that disadvantaged disabled people. Pre-1990, a lot of buildings including schools, businesses, and transportation systems, were not built with the intention of being accessible for disabled people.

The film “Crip Camp” showed how Camp Jened created a space where these issues could be discussed, and also how disabled people benefitted from the assistance of non-disabled individuals. Camp Jened wasn’t built fully able to accommodate disabled people’s needs, however, having camp staff there to assist, made it possible for disabled people to achieve things they would not normally be able to do at home (Newnham & LeBrecht, 2020, 29:03). For many people with disabilities, their parents were their primary caregivers, meaning there were often limitations around going outside the home or to do certain things. Camp Jened provided an opportunity for people to see what it was like to have someone assist them other than family for the first time (Newnham & LeBrecht, 2020, 29:22). Architectural barriers were a primary reason why disabled people struggled to have experiences similar to non-disabled people, and to be able to socialize in areas where non-disabled people were. Even if your home was accessible, the rest of the world was not. The film touches on how traveling outside the camp presented physical limitations, such as the ice cream shop not being wheelchair accessible (Newnham & LeBrecht, 2020, 30:10).

The Eugenics Movement

Another predominant issue of the past was the eugenics movement, which involved beliefs of trying to keep humans as fit or desirable as possible in terms of genetics which heavily intersected disability and race. During the 1900’s many bills were passed throughout different states that all involved forced sterilization of “undesirable” individuals. This often-included disabled people, no matter disability, and people of color, predominately black people (Eugenics: Its Origin and Development, 2021). While wealthy, white women were often denied sterilization or birth control when requested, these services were often pushed onto disabled people as a way to limit the reproduction of “unfit” hereditary or genetic traits (Critchlow, 1999, p. 15). Buck v. Bell took place in 1927, two decades after forced sterilizations had already started happening; the case looked into whether state statues allowing compulsory sterilization for the “unfit” under the reasoning “for the protection and the health of a state” violated the Due Process clause in the Constitution. The Supreme Court ruled it did not violate Due process, allowing states to continue compulsory sterilization and has not technically been overturned (with an exception for the ruling in Oklahoma ex rel. Williamson where the Supreme Court ruled you could not sterilize criminals against their will).

As time progressed, these issues become less evident for disabled people through the Americans with Disabilities Act (ADA) in 1990 and the repealing of most of the forced sterilization bills by 1980. As architectural barriers were slowly reduced, it revealed other issues that still lead to the exclusion of disabled people. There was still a lot of social stigma, misinformation, and ignorance that painted disabled people as being a burden or not as important as non-disabled people. People that weren’t disabled were not used to having to accommodate disabilities, and this tension often led to disagreements over issues like the cost of accessibility. Even if the rights of disabled people were federally protected, non-disabled people still found ways or reasons to not hire disabled people, or to not rent to them.

For many non-disabled people, it may seem like the architectural barriers disappeared when the Americans with Disabilities Act passed in 1990. However, as James LeBrecht discussed in an interview from 2020, the ADA just provided a bare minimum for architects and developers to follow. Disabled people were rarely included in conversations about accessibility, and rarely involved in the recent dialogue surrounding diversity and inclusion (Archinect, 2020). As long as buildings continue to meet the bare minimum requirements, there will be no push from the government to reform the ADA or add any additional parameters, especially when cost has continuously been used as a reason why not to accommodate disabled people.

Issues of SSI & SSDI

To this day, there are still a multitude of ways that the U.S. society (and government) discriminates against or excludes disabled people. One prominent issue for the disability community is how SSI and SSDI benefits apply. SSDI benefits and SSI are the main two federal programs under the Social Security Administration; they help provide income or benefits to disabled individuals. All applicants have to prove they cannot perform substantial gainful activity, this monetary amount that the SSA declares yearly is rigid, and not flexible. This means there are a lot of denials, as well as cases where disabled people were kicked off of benefits due to merely going over that set amount. People denied are often low-income with high rates of hospitalization, and receive little to no help from federal programs (Weaver, 2020). SSDI benefits work based off of what you have contributed in your life labor-wise, meaning that disabled individuals who have never been able to properly work, receive the lowest amount of money allotted. SSDI tends to predominately benefit individuals disabled later in life, where they had the time to put money back into the SSDI (through payroll taxes), and are able to receive a better income/benefit (Bystry, 2021).

SSI is not based on what you have worked, and is rather focused on current income. The way the SSI is structured, it highly discourages couples from getting married due to the income restrictions. If you are married, and both eligible for SSI, you receive less money as a couple, than as two individuals. This is because they calculate the payout rates differently for spouses than a couple not married. In marriages where only one spouse is eligible for SSI, they take into account the other non-eligible spouse’s income; this limits the income to $1,371 a month as a couple compared to $914 a month non-married (Social Security Administration, 2023). In research conducted for the Social Security Office of Policy, it was concluded that it would be better to not get married, but still live together, as to continue to receive the full payout rate as individuals (if both are eligible). The same findings applied if only one person in the marriage was eligible for SSI because the SSA would still take into account the income of the non-eligible (non-disabled) person (Wilschke & Balkus, 2003).

These policies create a stigma around getting married as a disabled person. Not only because society views disabled people as less marriable, but also because marriage could financially harm the life of a disabled person. Since it becomes more complicated to get married as a disabled person on SSDI/SSI (in comparison to a couple with no need for disability benefits), it also discourages disabled people away from having long-term relationships or trying to pursue marriage. This reinforces negative social stigmas about what disabled can or cannot do, and also make topics like conceiving even more complex. Some people want to be married when they have a child, and by making marriage complicated, they also make having children as a disabled person more complicated. Along with this, parental rights, and raising a child can more complicated than necessary when both parents don’t share the same last name or do not have legal marriage status (Child Welfare Information Gateway, 2022).

Inaccesible Flying Experiences

One particular issue that has emerged from activism in the disability community is wheelchair users’ experiences with accessibility issues on airplanes. Currently in the U.S., wheelchair users must be transferred out of their chair, to a proper airplane seat. These seats are not made with disabled people in mind, nor are the seats really accommodating to wheelchair users whose bodies are not the “normal” proportion. The U.S. government prevents airplanes here from allowing passengers to stay in their wheelchair, due to the standards airplane seats have to meet, which includes the force of gravity times survivability. Airplane seats are tested to meet these standards, however so are wheelchair restraint systems, in some cases being even more regulated to meet high safety standards. While passengers are forced into airplane seating, their wheelchair gets move down to the luggage area of the plane. This section absorbs a lot of the force and movement from turning, landing, and taking off. This results in possibly hundreds of pounds of luggage because thrown against a wheelchair very suddenly (Schulson, 2019). While airlines are required to return mobility devices, like wheelchairs, in the same condition as before the flight, this does not always happen. If a wheelchair is broken or damaged, the only required step of action to be taken is filing a claim with the airline (Wheelchair and Other Assistive Devices, 2017). This does not guarantee you will receive proper compensation or that you will even be able to afford or receive a wheelchair in a timely manner. This has left people stranded in airports and sometimes forced to pay more money to rent a wheelchair in the time being.

When the American Disabilities Act of 1990 was passed, there were significant requirements for other modes of transportation, but none of the legislation touched on air travel. Rather they follow the Air Carrier Access Act, which provides some guidance on accessibility, however, this policy provides little protection for disabled flyers when it involves compensation or rectifying damages. When government entities like the Federal Aviation Administration were contacted inquiring about future research of wheelchair restraint systems the response was simply that there were not enough funds to do so. Smaller movements such as AllWheelsUp, were formed to address to lack of research in this area, and had the premise of advocating for accessible air travel, where wheelchairs are not at severe risk of being damaged by luggage either. AllWheelsUp has appeared in front of Congress, put together a working group with members from large airline charters, and has been working with designers to build a wheelchair restraint system, able to fit in the space of a regular airline seat (Schulson, 2019). These efforts have led to more recent wheelchair-friendly policies in our legislation these past 3 years. One example is the U.S. Department of Transportation requiring airplane lavatories to be more accessible for wheelchair users. Another is the WHEELChairs on Airplanes Act which to prevent wheelchair users from being denied boarding based on their wheelchair having lithium-ion batteries. The MOBILE Act has also been discussed recently as it would aim to track damaged wheelchairs, and research how to improve airplanes to limit risk of damaging mobility devices like wheelchairs.

In the Today’s World

As I was watching the film in a classroom at Knight Library, I started to realize how so many of the things around me weren’t truly accessible. I got up to take a break, and seeing how all of the study rooms had door handles that required some level of grip or hand-like functionality. There were no automatic doors anywhere in the library except the entrance, and the bathrooms which opted to have simple push doors. Even the inside of the bathroom had a door handle, making the whole decision kind of purposeless. As I continued to walk back to the classroom, I also noted how none of the library aisles were really wide enough for a mobility device, and how people just left the step stools are over, making it really difficult to navigate areas that are even larger enough.

These observations really showed me how inaccessible a lot of areas still are, unless you depend on others (often non-disabled) to assist you in those moments. Disabled people struggle to have independence because even with the accessibility that exists today, they still have to rely on non-disabled people to help with everyday tasks that most non-disabled people can independently do. This could include reaching items off high shelves in stores, or hearing your name be called in a doctor’s office. It was really eye-opening to acknowledge that there were so many parts of society, and public spaces that are simply created without the thought of disabled people in mind. I didn’t expect to be so taken aback at how many barriers still existed, as someone who lives with disabling health conditions and needs accommodations to function on par with others. I was already really aware of how ableism is still strongly rooted in American culture through labor standards, financial policies, and social exclusion.

To follow up on that last point, it was also really surprising to see how much the U.S. government utilized “separate but equal” as a valid reason to not make spaces accessible. A lot of the disagreements over access boil down to cost, which shows that the government prioritizes money over the daily lives and wellbeing of disabled people. When it came to financing the Vocational Rehabilitation Act, cost was originally more important to the Nixon administration than attempting to fix the unjust barriers that specifically discriminated against disabled people (Newnham & LeBrecht, 2020, 44:55). It didn’t matter to administration that disabled people wanted to be able to occupy the same spaces or have the same opportunities as non-disabled people could, because it was okay if it was “separate but equal”.

Intersectionality

Intersectionality is a really important aspect of disability rights because, anyone can become disabled at any point of life. Disability can be experienced no matter gender, race, socioeconomic status, political affiliation, etc. Along with this, even if you do not personally experience disability, it may not be uncommon for a family remember, partner, or friend; it’s important to care about disability because it will most likely impact you or those you care about at some point in your life. As someone who didn’t have a serious health condition until college, I didn’t realize how serious these adversities were, until it also impacted me. The challenges, judgments, and assumptions made towards disabled individuals, may push these individuals to stick together as a community because they understand how the world reacts to what they view as “different”.

Lionel Je’ Woodyard discussed his experience being a black man, and compared the struggles of being black to being a wheelchair user, due to how society treats and reacts to you. It was really clear how racism and ableism influenced some people’s aggression or annoyance towards disabled people, black people, and the intersection of disabled, people of color. People didn’t want to change their lifestyle or make space for wheelchair users (Newnham & LeBrecht, 2020, 30:32). The intersection of the experiences faced by both disabled people, and by black people could be seen through the Black Panthers choice to help support the sit-in for Section 504 by getting food and water inside the HEW building (Newnham & LeBrecht, 2020, 1:08:49). No matter the limited resources the Black Panthers had, they stood against oppression, and this was really inline with what disabled activists were also fighting against, so they supported them the whole way (Grim, 2021).

Nancy made a great point when the right to privacy was discussed. So many disabled people don’t get a right to privacy in the same way that able-bodied individuals do. Sometimes people just want to be alone, or to think alone, and Nancy brings up an important point that disabled people, especially dependent on a parent, may never get that ability (Newnham & LeBrecht, 2020, 34:28).

Another example is the right to vote; there are still accessibility barriers when it comes to voting as a disabled individual. Whether that be because of transportation, non-accessible wait times/polling stations, or needing assistance to vote. Since 2021 alone there have been numerous measures that would limit accessibility to vote. This includes measures that would punish assisting someone to vote (Texas S.B. 1), restricting curbside voting (AL H.B. 285), limitations to absentee voting (IA S.F. 568), and restricting mail voting (TX H.B. 3920) (Miller, et al., 2022). While mail-in ballots are not a perfect solution (and do not address the needs for accessibility fully), states that have adopted this more accessible method have been shown to have better voter turnout. Oregon has been in the top 10 states in regards to voter turnout for the past two Presidential elections in 2016 and 2020, and it is inferred this could be because of our accessible voting system of mail-in ballots, as well as automatic voter registration and voter’s pamphlet mailed out around three weeks prior to election day (McDonald, 2020).

 

Works Cited

Archinect. (2020, March 7). Crip Camp: An interview with filmmaker Jim Lebrecht about accessibility, Universal Design, and spaces of freedom. Archinect. https://archinect.com/features/article/150185908/crip-camp-an-interview-with-filmmaker-jim-lebrecht-about-accessibility-universal-design-and-spaces-of-freedom#footnote2

Bystry, D. (2021, August 12). Understanding Social Security Disability benefits. Social Security Administration. https://blog.ssa.gov/understanding-social-security-disability-benefits/#:~:text=SSDI%20is%20funded%20through%20payroll,Act%20for%20the%20self%2Demployed.

Buck v. Bell, 274 U.S. 200 (1927)

Child Welfare Information Gateway. (2022). The rights of unmarried parents. U.S. Department of Health and Human Services, Administration for Children and Families, Children’s Bureau. https://www.childwelfare.gov/topics/systemwide/laws-policies/statutes/parentage/

Critchlow, D. T. (1999). Intended Consequences: Birth Control, Abortion, and the Federal Government in Modern America (p. 15). Oxford University Press.

Dimmick, B., & Aksoz, A. M. (2022, October 26). Voting with a disability: Breaking down barriers to the ballot. American Civil Liberties Union. https://www.aclu.org/news/voting-rights/voting-with-a-disability

Eugenics: Its Origin and Development (1883 – Present). National Human Genome Research Institute. (2021, November 30). https://www.genome.gov/about-genomics/educational-resources/timelines/eugenics

Grim, A. (2021, December 19). The 504 Protests and the Black Panther Party. Disability Social History Project. https://disabilityhistory.org/2021/12/19/the-504-protests-and-the-black-panther-party/#:~:text=504%3A%20Civil%20Rights%20for%20the,activity%20receiving%20federal%20financial%20assistance.%E2%80%9D

McDonald, M. P. (2022, December 7). Voter Turnout Data. US Elections Project . https://www.electproject.org/election-data/voter-turnout-data

Miller, L., Waldman, M., Crayton, K., Efrati, M., Singh, J., & Grange, C. (2022, January 12). Voting Laws Roundup: December 2021. Brennan Center for Justice. https://www.brennancenter.org/our-work/research-reports/voting-laws-roundup-december-2021

Netflix. (2020). CRIP CAMP: A DISABILITY REVOLUTION. Youtube. Retrieved August 6, 2023, from https://www.youtube.com/watch?v=OFS8SpwioZ4

Schulson, M. (2019, December 10). Wheelchairs on Planes: Why Can’t Passengers Use Their Own Onboard? NPR. https://www.npr.org/sections/health-shots/2019/12/10/786559969/wheelchairs-on-planes-why-cant-passengers-use-their-own-onboard

Skinner v. Oklahoma ex rel. Williamson, 316 U.S. 535 (1942)

Social Security Administration. (2023). A Guide to Supplemental Security Income (SSI) for Groups and Organizations. [PDF] https://www.ssa.gov/pubs/EN-05-11015.pdf

Weaver, D. A. (2020). Social Security Disability Benefits: Characteristics of the Approved and Denied Populations. Journal of Disability Policy Studies, 32(1), 51–62. https://doi.org/10.1177/1044207320933538

Wheelchairs and Other Assistive Devices. U.S. Department of Transportation. (2017, November 15). https://www.transportation.gov/individuals/aviation-consumer-protection/wheelchairs-and-other-assistive-devices#:~:text=Airlines%20are%20required%20to%20transport,cargo%20portion%20of%20the%20aircraft

Wilschke, S., & Balkus, R. (2003, December 1). Treatment of Married Couples in the SSI Program. Social Security Office of Policy. https://www.ssa.gov/policy/docs/issuepapers/ip2003-01.html

For anyone interested in AllWheelsUp: https://www.allwheelsup.org/