CW: Ableism
Independence is a cornerstone of society. From the time we are young, we are encouraged to do things for ourselves. Children take pride in learning to tie their shoes, teenagers yearn to get their driver’s license, and young adults look forward to moving out.
As a person with cerebral palsy, independence is difficult to achieve. It is never easy to need help with daily tasks. Sometimes, I wonder what it would be like to shower and get dressed in complete privacy. Imagine hiring a perfect stranger to help you get dressed, showered, and use the restroom. For many disabled people, this is a reality of their lives.
I rely on others every day. Relying on other people is never easy. During my first three semesters of college, I hired three different PCAs (personal care assistants).
There were times when the revolving door of PCAs left me frustrated. Shortly before Thanksgiving 2018, I grew so frustrated that I was brought to tears. I went to bed upset because all I wanted to do was enjoy college.
Sometimes, I wish I could go out to the grocery store, movie theater, or mall alone. I’d love to run errands in the morning or go out for breakfast. Unfortunately, cerebral palsy prevents me from driving, so I have to coordinate my schedule with someone all of the time.
Finding accessible housing is another obstacle that can leave independence out of reach. Affordable homes that meet accessibility needs are hard to find. The waitlists for accessible apartments can last for years.
Making a home accessible is also very expensive. According to Better Homes and Gardens, the cost of making a bathroom ADA-compliant ranges from $25,000 to $50,000. HomeAdvisor, as of April 2023, says the average cost of modifying a home to make it accessible is $4,674, with a range of $130 to $19,000.
Many disabled people end up living in places that don’t suit their needs, —without ramps, elevators, roll-in showers, or enough space for mobility devices or caregivers. Some have no choice but to stay in institutions or nursing homes because there’s nowhere else safe for them to live. Even when accessible housing is available, it’s often priced beyond what disabled people can afford, given their income and asset limits. Housing should be the basis for independence, but for many, it becomes another barrier that limits choices and keeps them from fully participating in their communities.
Financial independence is also difficult for disabled people to achieve. Disabled people face higher rates of poverty, usually not due to oversight, but because the systems are designed this way.
Workplaces are often exclusionary by design. Many workplaces have rigid schedules, inaccessible environments, and fail to provide accommodations. This exclusion limits employment opportunities and often relegates disabled people to lower-wage jobs. Even those who do find work face discrimination and systemic bias that hinder their chances of achieving economic stability.
Social programs further reinforce this exclusion. They are set up in a way that traps disabled people in poverty by penalizing them for earning too much or saving beyond strict limits. These rules promote dependency rather than encouraging independence. The system keeps disabled people economically vulnerable, which is not an oversight but a deliberate choice.
For me, Massachusetts Medicaid plays a crucial role in my life. It funds my personal care assistants (PCAs), who assist me with daily activities such as bathing, dressing, and toileting. Without Medicaid, I would not be able to afford PCA services, which cost approximately $60,000 each year.
Unfortunately, Medicaid has strict income and asset limits. Often, people are limited to having less than $2,000 in assets. While there are ways to work around these limits, like ABLE accounts, Medicaid buy-in programs, and special needs trusts, these also have strict rules.
These programs are necessary, but they often put disabled people in impossible situations. To keep the care we depend on, we have to stay poor. To get services that help us live, work, and be part of our communities, we must accept financial limits that no nondisabled person would.
Independence becomes conditional—it is only given if we agree to limit our own potential. This is not what independence should be. True independence means having the freedom to plan a future without fearing the loss of the support that keeps us alive. It means being able to save for emergencies, pursue education, accept a promotion, or get married without risking essential care.
It means understanding that disabled people are not burdens to manage but citizens who deserve the same dignity, opportunities, and autonomy as anyone else. Changing these systems is not charity; it is justice. The policies that keep disabled people in poverty are choices—and different choices are possible.
Raising asset limits, removing penalties for marriage, improving access at work, and making long-term support available regardless of income can help build a society where independence is a right, not a privilege. I want what everyone wants: a chance to live fully, to contribute, to grow, and to make choices about my future without being punished for wanting more.
Independence should not be something disabled people must fight for constantly. It should be something everyone is supported in achieving. Until our systems reflect this, independence will remain out of reach for too many.
Sources:
Carino, Jerry. “NJ Forces Disabled Howell Student to Make Brutal Choice: Internship or Health Aide Money.” Asbury Park Press, Gannett, 21 May 2018, http://www.app.com/story/news/local/values/2018/05/21/disabled-howell-student-nj-forces-choice-internship-health-aide/610909002/.
Janzer, Cinnamon. “The [Un]Affordability of Accessibility: The Challenge of Retrofitting American Homes.” Shelterforce, National Housing Institute, 22 June 2023, https://shelterforce.org/2023/06/22/the-unaffordability-of-accessibility-the-challenge-of-retrofitting-american-homes/.
LaGorce, Tammy. “Seeking Marriage Equality for People with Disabilities.” The New York Times, The New York Times Company, 25 Aug. 2022, https://www.nytimes.com/2022/08/25/style/marriage-equality-disabled-people.html.
Romig , Kathleen, et al. “The Case for Updating SSI Asset Limits.” Center on Budget and Policy Priorities, Center on Budget and Policy Priorities, 25, July 2023, http://www.cbpp.org/research/social-security/the-case-for-updating-ssi-asset-limits?fbclid=IwAR0wZj-zM_VqbPoQ4RV3WZUbOBCKVbnxXlV9lJeWo4GLEVAx2EomA5klzoo_aem_AfEqv7yxyHvw-DLrwMkFZ4LovFDDWokEDXSN5qdX6LwdCd85JZbF0gQkswCdVv1LpVA.
Shapiro, Joseph. “These Disabled People Tried to Play by the Rules. It Cost Them Their Federal Benefits.” NPR, NPR, 8 June 2024, http://www.npr.org/2024/06/08/g-s1-3475/social-security-ssi-asset-limits.