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During my sophomore year of college, I wrote my will. That year was filled with trauma. I’d noticed a constant ache in my lower back that soon trickled down my legs and into my feet. They started to look like mountains with peaked arches and small toe pebbles that tucked beneath their surface. I skipped many classes so that I could visit neurosurgeons who eventually diagnosed me with a rare, non-fatal neurological condition called Tethered Cord Syndrome.
When my boyfriend learned that I was drafting my will with a lawyer, he panicked, thinking that my disability was the threat. I told him, “I am not afraid that my body will kill me. I am afraid that I will die at the hands of my inaccessible school.”
This fear wasn’t rooted in some anxious fantasy, but in the harsh reality faced by all disabled students. Like many institutions, my art school did not have an accessible fire escape plan. When I asked how I was supposed to carry my service dog, manual wheelchair, and my weak, wobbly legs down the concrete steps, I was told to wait patiently and they would try not to forget me. So, as instructed, I waited and watched as the able-bodied students rushed past me to safety. I spent this time contemplating my own death and the death of the one disabled professor who sat in the stairwell with me.
No one ever came to get us.
Throughout the rest of the school year, this fear was affirmed as I was persistently met with physical, cultural, and social barriers. Sometimes my wheelchair and I would get stuck in the bathroom stall. I’d pray someone would stumble upon the scene to help while also hoping no one found me stuck with my pants down and ankles pinned between the toilet and my wheelchair.
After critiques, where we spent four hours at a time giving constructive criticism about each other’s art, the Disabled and Black students would silently shuffle into my dorm room. We’d independently critique each other’s artworks because our in-class discussions were led by a white, non-disabled faculty member who bluntly said that our artwork celebrating our cultures would not make any sense to people in what they called the “real world.” When the elevator broke down, I was forced to miss classes because the school neglected to put a backup plan in place despite my pleas. As I turned to wheel out of the school, the security guard shouted, “Why don’t you just get up and walk?”
Every student experiences emotional and physical tolls in college: student debt, overbooked schedules, and fast-approaching deadlines. But everyday stress is amplified for the Disabled student who, on top of all that, also experiences hostile inaccessibility, ableism, and a lack of representation. They are expected to ignore their bodies’ needs in order to fulfill the ableist demands of their institution.
Because inaccessibility hindered my daily life, I spent most of my free time begging the administration for equal access. I felt like I was going to war with an opponent who refused to fight fair. Administration made little effort to address the inaccessibility that surged through the walls of the institution, claiming to be restricted by the school’s historic building status or lack of funding.
This forced the responsibility of accessibility and change onto the shoulders of disabled students. There were good professors who would let me leave early when they saw my health declining and others who would remove the chair from the desk before I arrived so that my wheelchair could smoothly slide in. They made the school year bearable but to settle for bearable is no way to thrive.
Occasionally, I’d win a battle like successfully getting a ramp, but it never outweighed the stark reality and overwhelming fear that consumed me: I could die here. Growing up my mother always said that I could endure pain simply by putting mind over matter. When I started to feel the emotional and physical toll of attending an inaccessible institution, I thought that maybe I wasn’t strong enough—in fact, it’s the system that’s broken.
A crucial way to fix our nation’s inaccessible school system is to share our experiences, to refuse to remain silent. We must amplify our stories because our rebellion disrupts the pattern. We must celebrate the rich values of disability art and culture and recognize that inaccessible colleges force out passionate disabled students who bring critical perspectives to an otherwise non-disabled discussion.
We must redefine our approach because the needs of disabled people are not “special,” our needs are human. At the bare minimum, disabled students deserve safe, accessible, and equal access to the education we’re guaranteed by law.
This upcoming school year I have decided to transfer to a new college. I do so begrudgingly, as I won’t be graduating from my dream school. But I try to remind myself that this dream school doesn’t even have a ramp to their stage for my graduation. They never expected me to survive there in the first place.
Oaklee Thiele (she/her) is a disability rights activist, public speaker, and protest artist whose work chronicles life from the disabled perspective and addresses systemic discrimination within academic and artistic institutions. She is the co-founder and head artist for the My Dearest Friends Project, an international art collaboration that archives, illustrates, and amplifies the stories of disabled individuals.
The post In the Stairwell, We Will Die appeared first on Rooted in Rights.
moreIn Pakistan, disability has been overlooked and ignored in all aspects of life, including administrative, financial, and legal spheres. As a result, people with disabilities are the most disadvantaged since we are unseen, unheard, and miscounted in the country.
Notably, one billion individuals, or 15% of the world’s population, are believed to be disabled. People with disabilities are marginalized in society and face a world steeped in prejudice, pity, and humiliation. We often have limited access to decent education and meaningful jobs. The number of people with disabilities in Pakistan is estimated to be about 30 million. Disabilities are classified as physical hearing, vision, speech, and intellectual. These are further classed as mild, moderate, and severe/profound.
Understanding the specific plight of disabled women in Pakistan is critical since we are often at the lowest rung of social, economic, and cultural marginalization. Women are generally mistreated and subjugated in Pakistani society; disabled women endure the most of this discrimination. We are frequently excluded from family gatherings; people look at us with pity. People stare or ask intrusive questions—on the streets, in marketplaces, even in educational institutions—which causes or exacerbates the depression with which many of us live.
People with disabilities, as well as groups advocating for our rights, confront several challenges and restrictions. The challenges of disabled women and girls are not treated separately from those of men and boys with disabilities, which erases the specific issues we encounter at the intersection of ableism and sexism. Unfortunately, there is no data on disabled Pakistanis outside the gender binary. There is little public awareness of the issues affecting people with disabilities in general, let alone disabled people of marginalized gender; government commitment and will are also lacking. As a result, the key stakeholders are unfamiliar with the rights of disabled people of marginalized gender, as well as the laws, policies, and protocols associated with us. Consequently, there is minimal adequate implementation. We routinely get left behind.
In 1981, the government of Pakistan passed a law to provide for the employment, rehabilitation, and well-being of disabled people in the country for the first time. The original law established a 2% quota for people with disabilities in all government and non-governmental organizations; a few provinces have since seen the quota increased to between 3% and 5%. The law also states that disabled people’s working conditions cannot be less favourable than those of other employees in an establishment. People with disabilities cannot be hired at a lower wage or with fewer benefits. In addition, the Pakistani government ratified the “ILO Convention on Vocational Rehabilitation and Employment of Disabled Persons.” It has also ratified the “United Nations Convention on the Rights of Persons with Disabilities.”
I’ve confronted several challenges to employment in Pakistan, as many other disabled people face. First, employers have a negative attitude about hiring me—despite my talent, qualifications, and capabilities. In Pakistan, the stigma is exacerbated by the fact that, for many, the only image they have of a disabled person is that of an impoverished street beggar.
Even if the stigma is removed, structural hurdles to accessing employment for people with visual, hearing, speech, mental, or physical impairments remain. This includes: getting to work (road quality and transportation), moving around the workplace (ramps, accessible bathrooms, etc.), and doing the work itself, with the help of technology and other accommodations.
Most importantly, Pakistan has one of the lowest percentages of female labour force participation in South Asia; women with disabilities face even more impediments to employment. Furthermore, rehabilitative and educational programmes tailored to the needs of people with intellectual disabilities are few, making them less employable.
There are additional challenges when an economy is predominantly agricultural, as it is in Pakistan. For someone with mobility issues, for example, being a productive worker in a rural economy can be impossible when navigating terrain that is inaccessible. Moreover, as I experienced, the country has a broad pool of potential employees. Without incentives, companies are less likely to choose applicants in whom they must invest money to accommodate workers.
Another barrier I face on the job is a persistent lack of job advancement opportunities. My employer, who wishes to establish an inclusive workforce, says it is difficult to find qualified women. Nearly all people with disabilities that it has recruited so far are men. Therefore, there are few job and training options for women with disabilities. However, there are positive instances of other local and multinational companies in Pakistan that have successfully established an inclusive workforce, where the best talent acquisition and management practices are used. Foreign stakeholders actively promote diversity in industries such as telecommunications, fast-moving consumer goods, and tobacco.
Discrimination and biases make it hard for disabled workers to find work. However, there are other factors that keep people with disabilities from seeking work in the first place. Many people with disabilities face a variety of challenges when looking for work, going on interviews, and working in an office.
For example, I also face obstacles when using public transportation. It is difficult to travel by taxi or auto-rickshaw. This makes finding new or better job opportunities a challenge. Public transit is usually uncomfortable and even dangerous. Buses are neither well-regulated nor easily accessible to those with disabilities. Not only are there no ramps, bells, or braille buttons, but buses frequently do not stop for those with disabilities at all. While changes in some locales are being seen, the overall infrastructure is still unacceptably abysmal.
Discrimination against people with disabilities in Pakistan is serious and prevalent, yet I believe it is primarily motivated by ignorance rather than hatred. I don’t think that Pakistani people dislike people with disabilities; many simply do not know how to interact with us.
I am hopeful that we can work together to develop and execute initiatives to boost employment and earnings for Pakistani disabled people of marginalized gender. A critical intervention is to minimize early prejudices towards disabled girls, women, and children and adults outside the gender binary as well as their own internalized stigma. Well-established, evidence-based anti-stigma interventions should be used in education to develop students’ knowledge, understanding, and beliefs about people with disabilities.
Other initiatives include improving education-to-career transition activities to reinforce ideals of independent living, economic self-sufficiency, and increased post-secondary educational achievement among disabled people of marginalized gender. We must also try to decrease isolation through mainstreaming, mentorships, networks, and early job experience.
I strongly believe that the way forward for disability justice in Pakistan must include full participation from disabled Pakistani women, girls, and others of marginalized gender. Our contributions to policy, decision-making processes, and laws affecting us must be recognized for the true value that they hold. It is high time to make a commitment to end the exclusion of disabled women, girls, and others of marginalized gender. The crucial first step must be recognition of the untapped strength and resilience we possess, so that we can lead the way.
Ruqiya Anwar (she/her) is an independent researcher and sociopolitical analyst from Pakistan. She holds a Master’s degree in Media and Communication Studies.
The post The Many Challenges of Working Disabled Women in Pakistan appeared first on Rooted in Rights.
moreThese comments are available as a PDF here.
September 12, 2022
Alejandro Reyes
U.S. Department of Education
400 Maryland Ave. SW, PCP–6125
Washington, DC 20202
Autistic Self Advocacy
moreThese comments are available as a .pdf here.
The Autistic Self Advocacy Network (ASAN) appreciates the opportunity to provide recommendations on the contents of
moreIn an interview with MSNBC, a representative for the group Moms for Liberty appeared to imply that LGBTQ+ children should be educated in separate
moreASAN is deeply disappointed by the Inflation Reduction Act. While the bill contains some small investments that will tangentially benefit the disability community, almost
moreOne aspect of the pandemic made life more accessible for those of us whose disabilities limit our ability to participate in cultural, educational, and employment opportunities. People with disabilities and those who are immunocompromised, parents who can’t afford childcare, folks for whom traveling endangers them, and many other groups benefited from the measures taken once the magnitude of COVID-19 became apparent in the U.S.
As events transitioned to virtual-only in 2020, many of those groups suddenly had access to concerts, classes, employment, and participation in decision-making by their local and state governments. Disabled journalists could cover events—including press conferences, trials, and other proceedings—without travel cost in time, money, or spoons. For two years, people with disabilities and other restrictions weren’t just being accommodated, we were included.
Those events didn’t switch to virtual because new tools suddenly became available. The tools, including technology, have been available for decades. In 1998, as Communications Manager for a Council of Governments, I coordinated venue logistics for a day-long program with 13 speakers. We used audio/visual equipment to mitigate a room design that would have prevented everyone from seeing and hearing the presentation. The only accommodations missing were an ASL interpreter, an internet connection, and a site to host streaming. The pandemic merely forced governments, individuals, and organizations to use what’s already available; they could no longer exclude people with disabilities and other limitations without excluding everyone else.
The pandemic is far from over. More than one million people are dead in the U.S. alone. That is .29 percent of the population—almost four times the rate of the entire world, which has lost .079 percent of the population. Hundreds more die every day. Tens of millions of children have lost a parent or other caregiver. An estimated 56 million U.S. residents potentially face permanent disability from Long COVID, more than 7.5 percent of the population. Transmission and case numbers are going up, although no government entity is accurately reporting the increases.
Despite this devastating reality, privileged people, who saw inclusion as an inconvenience, are actively working to take unprecedented accessibility away. Many believe that, because meeting in person is an option again, participation of those unable to attend should no longer be considered in logistical planning. While giving lip service to those unable to attend in-person—whether because of the pandemic or previously existing restrictions—priority has shifted to alleviating Zoom fatigue. In reality, allowing in-person events does not preclude offering interactive video/audio options to all who need or want them.
However, offering online options requires some cost regarding staffing and, depending on the venue, additional equipment. All levels of the U.S. government—once it was documented that the pandemic disproportionately impacts those already marginalized—have made it very clear that they give more weight to the prosperity of corporations than the lives of residents. This is exemplified by Rochelle P. Walensky, director of the Centers for Disease Control and Prevention, applauding a disease that she erroneously believed only kills those with pre-existing conditions and disabilities. Most public officials have completely abandoned mitigation attempts. Given that, it’s not surprising that few organizations will make the effort or expend funds to maintain inclusivity. This serves to undergird the critical need for effective, compassionate government that prioritizes the needs of all people.
Those of us who are marginalized and familiar with history are only too aware that a strong contingent of people in the U.S. fights to return this country to the days of its founding. For too long, the freedom to pursue life, liberty, and happiness was extended only to property-owning white males. That contingent and their co-conspirators work diligently to eliminate any additional rights fought for since the Constitution was written.
As in all genocidal, supremacist projects, rights are being stripped from the most vulnerable first. They almost always start with racialized, queer, and disabled people, often including those disabled as a result of epidemics and pandemics. Nationalists and supremacists begin eliminating human rights strategically, with exclusion of oppressed people from voting, jobs, healthcare, and exercising their Constitutional rights. They also accelerate the exclusion of marginalized children from school, sports, and access to books and information. These exclusions are often presented in ways designed to seem innocuous to those who are not impacted and choose to remain oblivious to the suffering of others.
Today, those actively working to exclude disadvantaged populations from continued participation have myriad justifications for why full inclusion isn’t possible. However, they deliberately ignore how pandemic protocols eliminated many of those excuses. As events migrate away from online-only, rather than embracing hybrid options some organizations are working to further ostracize marginalized populations. Many are eliminating everything but in-person events; they won’t even make video recordings available to consume at a later time.
I would consider offering events with an option for real-time online access fully inclusive; providing recordings so people can watch later is the bare minimum accommodation. Providing neither option is irrefutably exclusionary. With millions of people newly disabled and more whose medical conditions preclude any exposure to COVID-19, at a minimum events should be recorded and made available online.
Inclusive planning may require significant effort and resources on the part of event organizers, but it’s very possible. I regularly participate in hybrid meetings via computer. I also have access to much more, including conferences with hundreds of attendees and numerous learning and networking opportunities all designed to include everyone.
While many people suffered from isolation brought about by pandemic protocols, others suddenly had access to entire worlds that once excluded them. Those who benefited from the ability to participate in once inaccessible events will not willingly forfeit the opportunities offered. It behooves planners to take into account accommodating those unable to attend events in person, especially as this group grows larger with millions disabled by Long COVID. Doing so not only reduces the possibility of ADA complaints, it also increases the pool of those available to contribute to their events’ goals.
For months, many institutions willingly employed the tools necessary to make events accessible to anyone who wanted to participate in them. There is no reason, except deliberate, systemic exclusion, to stop using those tools. Claims that the cost of accessibility is prohibitive or that they lack resources further demonstrates how little event organizers for governments and larger organizations care about listening to and including those with disabilities.
F.I. Goldhaber’s (they/them) words capture people, places, and politics with a photographer’s eye and a poet’s soul. Paper, plastic, electronic, and audio magazines, books, newspapers, calendars, broadsides, and street signs display their poetry, fiction, and essays. Left Fork Press will publish “What Color Is Your Privilege?”—a collection of political statements in poetic form—this September. You can learn more about them on their website.
The post Disregard for Disabled Lives in a Pandemic appeared first on Rooted in Rights.
moreThe Autistic Self Advocacy Network applauds the Department of Education’s release of new, critical guidance to help ensure students with disabilities are not discriminated
moreI am angry—angry that Fair Pay for Home Care was not fully funded in New York’s budget in January 2022. And angry that the small pay increase that was approved won’t solve New York’s severe shortage of home care workers. This crisis has forced me to go without much-needed assistance every weekend. I have found myself in the hospital twice because of a lack of care. I need home care because I’m a 32-year-old disabled person with Spinal Muscular Atrophy Type 2.
I can’t live without home care workers. They help me get washed up, dressed, and into my chair. They clean my home, travel with me, and so much more. Without them, I’d be forced to return to a nursing facility; I fought hard to get out of there—for good reason.
Living in an institution was traumatic; I had no autonomy. I needed to live according to their schedules and policies. I witnessed violence, abuse, and neglect towards disabled people on a regular basis. I advocated fiercely for home- and community-based services, long term services, and support. Now I find that those resources are being ripped from under me like a rug, and I’m falling.
I’m not alone. There are many thousands who can’t find or keep care workers. According to “The Case for Investment in Higher Pay for New York State Home Care Workers,” a report by CUNY Graduate Center’s School of Labor and Urban Studies, “a 2018–2019 statewide survey of home care agencies found that, on average, 17 percent of home care positions were left unfilled due to staff shortages.” The reason? They only make $13.20 an hour, not enough to live, let alone thrive. New York’s budget raises this rate by only $2 an hour starting in October 2022, then another measly $1 the following year.
This is not right—they deserve better wages. The labor that care workers perform is essential, but I can’t find home care workers willing to accept a poverty wage. And I don’t blame them. Fair Pay for Home Care would have raised their pay to $22.50 an hour. The State Senate and the State Assembly said yes; Governor Hochul said no. I am outraged for them.
This problem is not going away. The home care shortage has worsened exponentially during the pandemic. The previously mentioned CUNY report emphasizes: “In a Fall 2020 survey, 85 percent of participating New York State home care agencies reported worsening staff shortages. As a result of these staff shortages, many individuals with unmet home care needs experience hospitalizations that might otherwise be unnecessary. Furthermore, many enter nursing homes—a costly alternative to in-home care that became especially dangerous during the COVID-19 pandemic.” Home care workers were struggling before March 2020. They’ve struggled to pay their bills, feed their families, and afford transportation. Many are on public assistance as a result. Our social safety nets—like SNAP, TANF, Medicaid, and others—are important additions to the tapestry of any government that claims to care for its citizens. However, those working for private companies (or the government) shouldn’t have to rely on them for the basic necessities of life. The just thing to do is for home care workers’ employers to pay them what they deserve. Otherwise both they, and the disabled and elderly people for whom they care, regularly fall through the cracks of a broken net.
In fact, I almost ended up back in a nursing facility. When I was hospitalized two separate times due to a lack of access to home care aids, I wasn’t sick; I just didn’t have anyone that could provide care for me. In an unconscionable situation like this, hospitals are my only choice.
This is my plea: listen to disabled and chronically ill people, especially those of us who require home care. Learn about the history of our treatment in this state, country, and around the world. Use that knowledge to advocate on our behalf when we ask you to, as I do now. Support the workers who support us—not just for us, but because we can’t win in isolation. We all deserve what we need to thrive.
Jensen Caraballo (he/him) is a disability rights activist and writer. His work has been featured at The Center for Disability Rights and Not Dead Yet. He is a 32-year-old Queer and Disabled person of color born in Guayama, Puerto Rico. Jensen is passionate about dismantling ableism and firmly believes that all lives are worth living with dignity and respect. You can follow him on Twitter and Instagram.
The post A List of Demands: A Living Wage for Home Care Aids Supports Disabled People appeared first on Rooted in Rights.
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