Last night I heard a news story about Marty O’Connor and his mother, Judy. After becoming quadriplegic, Marty opted to enter Chapman University‘s MBA program. When he graduated on May 20, Chapman awarded Judy an honorary degree. Judy apparently attended every class with Marty, helping him take notes and providing other physical assistance as necessary. The story has gone viral, and many of those sharing it indicate that the story makes them feel good. Not me. I’m pissed off.
First, I’m curious why Chapman can award an honorary degree but not reasonable accommodations. Chapman may be a private institution, but I have a hard time believing that it does not accept federal funding of any kind, including federal student loans to pay tuition. Under the Rehabilitation Act, Chapman would be responsible for accommodating students with disabilities. One of the simplest accommodations to provide those with limited mobility is note taking services. There should not have been a need for Judy to attend classes with Marty. Even assuming that Chapman could not provide all of the services rendered by Judy – personal care, for example, would not be a reasonable accommodation in most circumstances – Marty should have been served by the California vocational rehabilitation (VR) program. VR is designed to help individuals with disabilities achieve and maintain their employment goals, and can provide a range of services including personal care, transportation, and assistive technology.
The fact that Judy did not leave her son’s side during his MBA program is not something to be celebrated. Would we fawn over an able-bodied student’s mother going to graduate school with him or her? No! We’d probably be disturbed. If that story was covered by the media at all, it would be to discuss millennials’ failure to launch or overbearing mothers; the mother would most certainly not be praised.
My intent not to malign Judy; I have no doubt that she sacrificed a lot in order to help Marty be successful. And I believe that the media covering the story probably have good intentions, and want to commend the selflessness of a loving parent. But the current system designed to help people with disabilities relies far too heavily on parents to provide for adult children. In Indiana, for example, parents must be more than 80 years old in order their adult children with developmental disabilities to qualify for emergency placement on a waiver that provides in-home services. More than a decade after retirement age, Indiana still expects parents to provide the majority of care for adults with disabilities. By praising parents like Judy, who willingly make these life sacrifices, I’m afraid that the media perpetuates the myth that these relationships like those of Marty and Judy should be the norm. Yes, mothers should love their children. But when those children become adults, they need to have the opportunity to gain independence and flourish independently.
I told the above to my own mother, discussing the story with her this afternoon. She said that I was one to talk; after all, I rely on her to provide my transportation to and from work every day. Which brings me to my final point – society is still failing people with disabilities. I would gladly hire someone else to drive me to and from work, but I cannot afford it, even as an attorney. Though VR legally should have paid for my tuition, it refused, and I graduated with $83,000 in student loans, which I am still repaying. Though I am on Indiana’s Medicaid buy-in program, it pays caregivers so little – less than $10 per hour – that I cannot attract the quality individuals on whom I must rely. My sister, for example, receives personal care assistance through an agency, and that agency has failed to send someone to get her out of bed more than five times in the last month. It seems that people like Judy and my own mom have to step in because the social programs designed to help us are so crappy.
The next time you read a story like that of Marty and Judy, I encourage you to do more than “feel good.” Ask yourself whether everything is as sunny as it appears. And if the answer is “no,” ask what you can do to help change it.