For Kim Tarkowski, the prospect of retirement is bittersweet.
Tarkowski has worked for 27 years as a vision access advocate at the Bloomington-based LIFE Center for Independent Living [CIL], and is retiring this week. The center provides referral and information, assistive devices, support groups, and other services to help people with disabilities live independently in their community.
Their objective is under a newer framing than the “medical model," which primarily focused on “fixing” people with disabilities. Under the independent living model, the focus is instead removing barriers to access imposed by society and rendering assistance where needed. The goal is giving people with disabilities the freedom to make their own choices — even, Tarkowski said, when that means learning from bad ones.
“People with disabilities, just like anybody else, have the right to make stupid choices, or inappropriate choices,” Tarkowski said. “They also have to understand they’re gonna learn something that’s very uncomfortable when they make those choices.”
Tarkowski said she’s seen many things grow easier over her years in the field, in part thanks to more advanced and widespread assistive technology. Ubiquitous devices like smartphones can be helpful, provided people learn to use new functions.
“There’s apps with an iPhone or an Android phone that can help you read what’s on a page. And those are free apps. So if you have a phone it’s a matter of learning how to download that app and utilizing the information,” Tarkowski said.
That’s not to say things always improve with time. COVID-19 was a blow that meant job loss for many with disabilities, and Tarkowski was glad the LIFE CIL was able to help some of those people. There are also issues with everyday mobility.
Tarkowski explained that wear and tear on sidewalks, for example, can be a hindrance to those using mobility devices like wheelchairs or canes. And it’s not just aging infrastructure that can be challenging. Sometimes new developments are too, owing either to inaccessible design or simply being unfamiliar.
“The changes to a location — like Uptown [Normal], when they put the circle in — that didn’t make it real easy for folks that couldn’t see. Because you’re looking for corners, you’re accustomed to looking for corners,” Tarkowski said.
There are also troubling signs on a larger scale. Many advocates have voiced concerns about President Trump’s attempts to shutter the Department of Education, a sentiment Tarkowski echoed.
“That could be quite a problem for youth and adolescents with disabilities,” Tarkowski said. “It could put those youth back in a situation where they are not going to have the opportunities they currently have.”
Tarkowski also worries losing Medicaid — a program many speculate will see congressional Republicans’ chopping block — would harm many people with disabilities. Tarkowski called the prospect “absolutely horrifying.”
Concerns raised over Illinois Senate bill
Illinois Senate Bill 9 has been a subject of recent concern for disability advocates. The bill seeks to legalize medical assistance in dying in the state. That would allow patients, if diagnosed by a doctor as terminal within 6 months and of sufficient “mental capacity,” to receive prescriptions for lethal medication.
“I can see situations where that might be something that could be abused,” Tarkowski said.
Tarkowski emphasized that mistakes in the system could do serious harm when life-or-death stakes are introduced, comparing it to erroneous convictions under a death penalty. She added that many people already believe people with disabilities can’t have a high quality of life, an assumption that could feed systemic bias.
What comes next
Tarkowski has worked with her impending replacement as vision access advocate, Tiena Jordan-Kidd, for nearly a month now. She said open-mindedness and letting people engage with assistance at their own pace would be important for Jordan-Kidd to bring to the job.
“It could be that there’s somebody who really, really is not ready to move to using a magnifier or using a talking product. And that would probably be the most beneficial of the products that are available, but they’re saying ‘No, I don’t need that at this time.’ And that’s hard, because we’re all about being independent, but we have to also respect that consumer choice.”
For those outside advocacy work, Tarkowski gave a reminder that people with disabilities are first and foremost people, and not defined by their disability.
Stigma and structural barriers for people with disabilities will, for the moment, stick around. But in one form or another, Tarkowski thinks she will too.
“Going back to work, probably,” Tarkowski answered when asked what she looks forward to in retirement.
Tarkowski said she’s not yet sure what her future will bring, but floated volunteering as a likely inclusion.
LIFE CIL will host a celebratory open house for Tarkowski from 2-4 p.m. Friday at its Bloomington office.
