CW: Poverty
Lucy Robinson felt proud when she received an invitation to a prestigious conference in Germany. Robinson is a leader in disability advocacy. The invitation seemed like a well-deserved recognition of her own hard work and dedication.
But underneath that pride was an undercurrent of anxiety as she figured out the logistics of her journey. For Robinson, who is dependent on NHS (National Health Service)- funded around-the-clock care, going to the conference wasn’t just about booking a flight and packing a suitcase.
Her caregivers have intimate knowledge of her routine – which goes beyond just her physical condition. She hoped to submit a request asking if her caregivers could accompany her. Unfortunately, she learned otherwise. It wasn’t a lack of resources or inaccessibility that would hold her back. Instead, the barrier was a rigid policy.
The week that followed was filled with frantic coordination. Instead of working on her speech, Robinson was on the phone with administrative officials, family members, and anybody who might help get her through the bureaucratic maze. In the end, she traveled with her family.
The conference happened, but for Robinson, it was overshadowed by a long and mentally draining cycle of risk versus reward. While other speakers tried to deliver a common message, Robinson could barely make it through the day. Unfortunately, she is not alone.
In an Iowa apartment, Erica Carter saves Medicaid letters that chart the precarious state of her own independence. Carter works full-time and enjoys teaching students. When her income began increasing, she discovered she didn’t qualify for Medicaid services.
For Carter, Medicaid covered critical services, such as wheelchair repairs and home health aides. Without Medicaid, Carter had to drain her retirement savings and take on multiple jobs to pay for medical expenses, a financial gamble that drives home the stark realities that many in her position experience.
On the East Coast, Anna Landre had to navigate similar challenges even before she graduated from college. While she was a sophomore at Georgetown University, she had an opportunity to take a paid internship. It was an opportunity that could open the door to a potential career. But a $14-an-hour wage would increase her income just enough to disqualify her from Medicaid, which funded her personal care services she relied on.
A.J. Kreig has been navigating these challenges for more than 10 years. Kreig, who has Spinal Muscular Atrophy, uses a wheelchair and also graduated from the University of Minnesota in 2013. Personal care assistants are a critical part of his daily life. They help him with basic tasks like taking a shower, eating, and getting dressed.
While Minnesota pays for these services, there are caveats: Greig cannot make more than $1,113 per month. The message is blunt: In order to get the necessary care he needs to survive, he must continue to be poor. Though he has a degree, Kreig’s access to stable employment is limited, and the result is that he must navigate a world that equates freedom with economic hardship.
These stories highlight a reality that crosses national borders and personal backgrounds. The obstacles they encounter are not so much disability-related, they are structural in nature. An inflexible travel policy that is too rigidly designed, an income limit that hasn’t been updated in decades, and a benefits’ system that considers support to be only an interim solution rather than a basic necessity all add to this landscape.
For too many disabled people, their potential isn’t what is limiting them. Disabled people are dependable, creative, and hardworking employees. The real question is whether bureaucracy will allow them to show how valuable they are as employees.
Sources:
Carino, Jerry. “NJ Forces Disabled Howell Student to Make Brutal Choice: Internship or Health Aide Money.” Asbury Park Press, USA Today Co, 21 May 2018, http://www.app.com/story/news/local/values/2018/05/21/disabled-howell-student-nj-forces-choice-internship-health-aide/610909002/.
Dimitrova, Galya. “Oxfordshire Disabled Woman Feels ‘penalised’ for Wanting to Work.” BBC News, BBC, 27 Apr. 2026, http://www.bbc.com/news/articles/cj37dd24g46o.
Krebs, Natalie. “Disabled Iowans Say Medicaid Income Caps Limit Their Ability to Work.” Iowa Public Radio, Iowa Public Radio, 12 Mar. 2026, https://www.iowapublicradio.org/health/2026-03-12/disabled-iowans-medicaid-income-restrictions.
Littlefield, Susan-Elizabeth. “Minnesotans with Disabilities Say State Laws Restrict Financial Freedom.” CBS News, CBS Interactive, 20 Nov. 2022, https://www.cbsnews.com/minnesota/news/minnesotans-with-disabilities-say-state-laws-restrict-financial-freedom/.
Sostaric, Katarina. “Iowans with Disabilities Call for Medicaid Changes so They Can Advance Their Careers.” Iowa Public Radio, NPR, 31 Jan. 2025, www.iowapublicradio.org/state-government-news/2025-01-31/iowans-with-disabilities-call-for-medicaid-changes-so-they-can-advance-their-careers.
Sostaric, Katarina. “Bill Advances to Help Iowans with Disabilities ‘Work without Worry.’” Iowa Public Radio, NPR, 26 Feb. 2025, http://www.iowapublicradio.org/state-government-news/2025-02-26/bill-advances-to-help-iowans-with-disabilities-medicaid-work-without-worry.