Sophie: one of millions of reasons for a disability studies major at Arizona State University.EXPAND
Sophie: one of millions of reasons for a disability studies major at Arizona State University.
Evie Carpenter

Really, Arizona Regents, You Don't Think We Need Disability Studies?

Last week, an Arizona Board of Regents committee voted on 13 majors proposed by Arizona State University. The committee approved most of them — and rejected a proposal for an interdisciplinary bachelor of arts degree in disability studies.

I don't know all the behind-the-scenes politics underlying the regents' decision. And I'm told that this meeting of the Academic and Student Affairs Committee only offers recommendations, not binding decisions. Those will be made at the Board of Regents meeting November 14 and 15.

The disability studies major still has a shot, apparently. I really hope it's approved. Here's why.

I have been majoring in disability studies for 14 and a half years, since the day my daughter Sophie was born with Down syndrome. If there's one thing I've learned, it's that really, none of us know shit about disabilities or the people who have them, the laws that involve them, the history, the politics, the art, literature, medicine, science — any of it.

Not the pediatrician who insisted that my infant daughter did not have Down syndrome. (Blood test results three days later proved him wrong.)

Not the principal at our neighborhood public elementary school who announced that if my kindergartener couldn't act like all the other kids, she'd have to go to another school. (We finally hired a lawyer.)

Not Sophie's middle school classmates, who looked at me with giant eyes as I explained last spring in the most basic terms what Down syndrome is — and that this little girl they'd gone to school with for three years had it.

Not the special education teacher who just this fall sat in a room filled with Sophie's high school teachers and informed them that people with Down syndrome are always happy and like to high-five.

Upon hearing the last one, a friend asked, "What if that teacher had said the same about all the African-American students at the school?"

Take a minute and let that sink in.

One thing I most certainly have learned in the last 14 and a half years is that intellectual disability is the final frontier of multiculturalism, with disability in general running a close second. Many of us are uncomfortable around people with disabilities, often because of ignorance. (Count me in: Sophie is the first person with Down syndrome I ever met.)

Education is, of course, a vital ingredient in any recipe for meaningful change. And an interdisciplinary approach to disability could really make a difference in my daughter's life, in our world. In your world. Other universities are adding disability studies programs and beefing up existing ones. The New York Times has dedicated space to meaningful columns by people with disabilities who study the issue, including Rosemarie Garland-Thomson, who helped start the Disability Studies Initiative at Emory University in Atlanta. There are conferences, books, websites, newsletters, near-constant discussions on my social media feeds.

But nothing, apparently, in my own backyard. Not yet.

My family lives two blocks south of Arizona State University's main campus in Tempe. We (Sophie included — she loved Fun Home and really hopes she gets Hamilton tickets for Christmas) walk to performances at Gammage Auditorium. We visit the art museum. Both my daughters attended preschool at the Child Development Lab. As far as I know, the CDL had never had a child with Down syndrome, but the staff was wonderful with Sophie; she thrived there.

Even on our best days, I was aware of the dichotomy — that she was surrounded by high-level academics that had no meaningful relationship to her and likely never would.

Some days were worse than others.

Sophie didn't walk till she was 3, and for many months she used a walker. I'd arrive at the CDL early, park in the adjacent lot, pull the walker out of the car, and together Sophie and I would navigate the several dozen feet between the parking lot and the front door. Step by step, it felt like miles, longer when she got frustrated, refusing to budge. One particular day, I took a couple of steps back to give Sophie some space to rest, gazing at all the people walking from building to building. I caught a glimpse of a familiar face, an adult woman much larger than Sophie, but with similar features. The woman had Down syndrome. I got excited for a moment, and then I noticed that the woman was picking up trash.

My chest got tight and my eyes stung and from then on, I didn't look up when Sophie and I were walking to the CDL, no matter how long it took.

That was more than a decade ago. In the years since, programs designed to include people like Sophie in college settings have popped up all over the country. There's one at the University of Arizona in Tucson. As far as I know, there is no such thing at Arizona State.

I don't know if people with intellectual disabilities still clean up garbage at ASU. I'm afraid to ask.

Strides have definitely been made. The Walter Cronkite School of Journalism at ASU is now home to the National Center for Disability Journalism (full disclosure — I'm a member of the board). I've spoken several times to an amazing class in disability offered by ASU's School of Social Transformation.

And, hey, someone actually wants to offer a major in disability studies. That's huge.

I'm told by insiders that it will happen, and sooner rather than later. I hope so. There's no time to spare.

Correction: An earlier version of this story incorrectly stated that the Arizona Board of Regents voted down the measure to create a Disability Studies degree at Arizona State University. It was the Academic and Student Affairs Committee, whose recommendations are not final decisions. New Times regrets the errors.

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