My readers know about my struggles to become gainfully employed over the past two years. If I’m lucky enough to get someone to see beyond my disability when applying for a job, often I still get turned down for the job. The biggest reason is that I require help using the restroom. Having a personal care assistant available to me is vital for my success in the workplace. Without a PCA, I would have no way to get to work or use the bathroom while at work. Employers aren’t obligated to provide assistance with personal care needs in the workplace. This is despite the fact that having a personal care assistant is perhaps the most critical accommodation that I would need.
In the real world, disability rights activists frequently make statements like “disabled individuals can contribute to society and the workforce if barriers to accessibility are removed!” However, this ignores the fact that many disabled people rely on others to help them with their activities of daily living.
According to the Job Accommodation Network, “Neither the Americans with Disabilities Act (ADA) nor Section 501 requires PAS (personal assistance services) as a reasonable accommodation, except when needed for work-related travel.” Personally, when I have applied for jobs and mentioned that I need a PCA, employers say that they cannot accommodate this.
Further complicating matters is the fact that some of us with disabilities rely on government programs like Medicaid. The problem with some of these programs is that they limit how much money you can earn and how many assets you can have. The system essentially forces disabled people to live in poverty to stay alive.
Take, for example, the story of Anna Landre, who has Spinal Muscular Atrophy. Landre graduated as valedictorian of her high school class in New Jersey in 2017. When Landre was a sophomore at Georgetown University, she was elated to have an opportunity to do a paid internship. However, at the time, Landre was forced to make a devastating choice: get paid for her internship at $14.00 an hour or lose the vital personal care assistance that she needs to live. This is a choice that those with disabilities should not have to make. Just because someone needs help with their personal needs, it doesn’t mean that they can’t work.
However, without Medicaid, most people couldn’t afford to pay their PCAs out of pocket. For instance, paying my PCAs would cost me over $50,000 a year, leaving me very little money for living expenses, if any. I would go bankrupt trying to afford a service that helps me stay alive.
Many disabled people want to work and can contribute in that way. We might need help to do our jobs. My needs and abilities are not mutually exclusive and I wish employers understood this. I want to be able to contribute to the workforce, and it shouldn’t matter that I need help to use the restroom to do this.
Carino, Jerry. “NJ Forces Disabled Howell Student to Make Brutal Choice: Internship or Health Aide Money.” Asbury Park Press, Asbury Park Press, 21 May 2018, http://www.app.com/story/news/local/values/2018/05/21/disabled-howell-student-nj-forces-choice-internship-health-aide/610909002/.
“Personal Assistance in the Workplace.” Job Accommodation Network, Job Accommodation Network, https://askjan.org/topics/persassist.cfm.