I
’m thinking again of a young woman from more than 20 years ago, in my early days of covering Complex Rehab Technology (CRT) for Mobility Management.
She was married, the mother of a toddler, going to college, working, driving a wheelchair-accessible van. She used a CRT power wheelchair because she was born with tetra-amelia, the absence of all four limbs.
The Assistive Technology Supplier (ATS) invited me to shadow the seating team as they built her new power wheelchair. I went twice — first when the demo chair was being trialed, and again for the final fit of her actual chair.
While all CRT provision has high stakes — personal mobility is on the line, which affects schooling, careers, parenting and community interaction — I noticed that this seating team was laser-focused. I figured that was due to the complexity of the power chair: This client needed a mini joystick and an elevating foot platform to serve as a vertical platform lift to raise her into the seat.
But even with that context, the team was almost grim.
My first shadowing day was in July in Southern California. We were in the provider’s parking lot of steaming asphalt. After the client and the rest of the team headed inside, the ATS held me back. He mopped his face with a bandana and said, “She’s divorcing her husband. Domestic violence. She’s their baby’s primary caregiver, but her husband has sued for custody. He says no one with her disabilities could be a fit mother. That’s his entire argument.”
He wiped his face again; it was sweltering out there. “We want her in the best power chair when she goes to court. One that demonstrates her capabilities. We don’t want her disabilities to be the center of this case.”
His voice dropped even lower: “We won’t have it.”
Their client won full custody of her daughter. But I remembered her again because of Texas v. Kennedy last week.
The cornerstone for disability rights
When I started covering CRT in 2001, the Olmstead decision was still being hailed as the new cornerstone for disability rights. The DOJ’s own website says the Supreme Court’s decision “held … that unjustified segregation of persons with disabilities constitutes discrimination in violation of title II of the Americans with Disabilities Act [ADA].” At the center of the case were Lois Curtis and Elaine Wilson, two women with mental health and developmental disabilities who had lived for years at the state-run Georgia Regional Hospital.
Clinicians said the women were ready for community-based programs. The women wanted that, too. But they were held in that hospital until they sued under the ADA, and the Supreme Court said, in essence, that public entities must provide community-based services to disabled people that are appropriate if that’s what those people want and if those services can be reasonably supplied.
The court said that keeping people in institutions when they could benefit from and succeed in their communities “perpetuates unwarranted assumptions that persons so isolated are incapable of or untrustworthy of participating in community life.”
That young mom and her seating team were fighting for her to be understood as a smart, capable, hard-working and nurturing parent, college student, employee and human being.
But in June, the DOJ said Olmstead is unenforceable. Last week, a United States District Court in Texas vacated several community integration provisions in response to Texas v. Kennedy, a case brought by Texas and several other states against Robert F. Kennedy Jr. in his role as secretary of the Department of Health & Human Services.
The ruling set aside both the definition of “most integrated setting” regarding support being provided where people with disabilities want to live, and the text, “In choosing among available methods for meeting the requirements of this section, a recipient shall give priority to those methods that offer programs and activities to qualified individuals with disabilities in the most integrated setting appropriate.”
The ADA and the Olmstead decision remain in place, but there’s no denying we face a slippery slope.
No one is an island
Everyone loses when people with disabilities are legally hidden away. First and foremost, people with disabilities lose their independence and the freedom of choice that all humans deserve. They lose their rights to study, work and participate how and where they wish to.
But the nondisabled lose, too. We all lose the talents, contributions and perspectives of people with disabilities when they are separated from society.
After the DOJ’s Olmstead notice, Tamara Kittelson, MS, OTR/L, ATP/SMS, WSP, executive director of the Clinician Task Force, told me, “As an occupational therapist specializing in Complex Rehab Technology for over 40 years, I mostly worked in community-based settings — because of the de-institutionalization movement. Services provided in the natural environments where people lived and functioned ensured their equipment worked well within their individual realities, which included their roles as family and community members.
“The Department of Justice opinion on the Olmstead decision flies in the face of what we know works. Community-based, inclusive services are not only less expensive long term, but also healthier and more dignified for the people who need them. Declaring the Olmstead decision ‘unenforceable’ turns back the clock to my childhood, when we didn’t see many people with disabilities around, because they were in institutions. That approach deprived society of the many contributions made by people with impairments who are included.”
To borrow from 17th-century poet John Donne, none of us is an island. Humanity is most productive, wisest and richest when we live together. When that is taken away, yes — people with disabilities are harmed the most, no doubt. But yes, everyone else loses, too.
Image: Pexels/Ryan Voyages
