EMILY WHANG / NEXTGENRADIO
What is the meaning of
Katrina Pham speaks with Heather Clark, who has cerebral palsy and is moving into a new home in Zion, Illinois, that is fitted with renovations to accommodate her physical needs. Most able-bodied adults may find tasks like cooking or choosing clothes basic. But these can be more difficult for people living with motor disabilities. Clark used to have trouble with tasks around the home, but the renovations help make her feel more safe and independent in her own space.
A home built with you in mind: What access can mean to someone living with disability
Home renovations help Heather Clark live as independently as possible
Click here for audio transcript
Heather Clark:
I’m a person that doesn’t let their disability and their limitations stop them.
My name is Heather Clark.
I have spastic, quadriplegic, cerebral palsy. Quadriplegic means that it affects all four of my limbs.
My disability makes it hard for me to do the physical things in life without assistance. But mentally, I function normally.
Home is where you feel safe and free to do what you want to do when you want to do it.
People with disabilities should be able to live, live as independently as they can.
I try to live as normal of a life as possible.
There was a lot of barriers in terms of the access to my home.
(Sound of buttons being pushed to control motorized wheelchair)
(Sound of handle being used to move wheelchair)
Oh, I’m stuck.
(Exasperated sigh from Heather)
(Sound of wheelchair whirring and moving)
It was very frustrating. Actually, I hated the fact that I couldn’t access my home freely.
And people kept telling me, okay, but you need certain modifications, and now I finally got those.
I always had to be around staff when I was at home.
So the modifications of the new home will allow me to live as independently as I’m capable of doing.
Before, like, the team members were picking out my clothes in the morning. They were picking it out because of the fact that I couldn’t get access to my closet before.
Sometimes you don’t want to wear what somebody else picked out for you.
I like to participate in things that I can do myself.
And now I’ll be able to make the choice to wear it, what I want to wear myself.
‘Cuz I can get in the closet.
That’s what I’m wearing tomorrow.
It’s like a sundress.
I’m a girl, I’m supposed to have a lot of clothes.
I plan on wearing more pink and purple because those are my favorite colors.
I feel like they need in different communities more homes like this, so everybody can access them, no matter what, like abilities, or conditions people have, I think that homes need to be more universally designed.
The reason why I advocate so hard for not only myself, but for those who don’t have a voice, because I want things to be better for the next generation of people that come after me with disabilities. So they don’t have to struggle with the same struggles that I am going through right now.
Living with a disability can be isolating, Heather Clark says, but her newly renovated home will empower her with what she needs to have more agency.
Clark’s home was revamped with accommodations to help her perform tasks she wasn’t able to do on her own 11 months ago — such as laundry or choosing clothes to wear.
She has aides who help her with daily chores, and she tries to help them cook because she wants to participate in household tasks as much as possible.
However, Clark was often irritated in her old kitchen because of her cerebral palsy, a motor disability that prevents her from being able to control and move her limbs with ease. Her kitchen sink didn’t allow her to move her wheelchair close enough to use the faucet, and the countertops were too high.
“It was very frustrating,” Clark said. “I hated the fact that I couldn’t access my home freely.”
Tasks that most able-bodied adults may find basic, such as cooking or bathing, are more difficult for people living with motor disabilities such as cerebral palsy. And spaces built only for able-bodied people exacerbate these difficulties.
Clark’s renovated home was built with her needs in mind — including accommodations such as automated entrance and exit doors and lower counters.
“Home is where you feel safe and free to do what you want to do when you want to do it,” Clark said.
Heather Clark uses a motion sensor to open the door to exit her home on June 19, 2023. This sensor allows Clark to be alone in her house and leave if there is an emergency.
KATRINA PHAM / NEXTGENRADIO
The house is a community home she found through Aspire, a Chicago-based nonprofit that supports people living with disabilities. The group’s community homes can house between three and eight people, and provide people with disabilities the opportunity to live together with support from aides.
Clark’s new kitchen is now fitted with an open space underneath the sink instead of cabinets. This allows her to fit her wheelchair underneath while using it.
Heather Clark sits in the renovated kitchen in the new house. She helped decide which changes to make in the home, such as choosing the colors of the tiles on the walls.
RIGHT: PHOTO COURTESY OF ASPIRE. LEFT: KATRINA PHAM / NEXTGENRADIO
She chose many of the new elements in her home, such as the different shades of pastel and forest green along with white-patterned tiles that line the walls of the kitchen. She chose hardwood flooring because it’s easier for her wheelchair than carpet.
Heather Clark tried buying a new phone a few weeks ago, but wasn't able to make it inside the store because it wasn't accessible for her wheelchair.
— Katrina Pham ✨ (@KatrinaPham_) June 21, 2023
"In a way I feel alienated, because I can't access certain places," she said.
More to come this week— @WBEZ #NPRNextGenRadio pic.twitter.com/5DrkQSY2qz
Before the renovations, Clark needed an aide with her at all times and was not allowed to be home alone. Her new automatic entrance and exit doors allow her to go in and out of her home in the event of an emergency, so she can be at home for up to eight hours alone.
For Clark, the changes are the next step in her journey to have more agency over her life.
“I like to be outside. I like to sometimes have people over, and just hang out with my friends,” she said. “The fact that I don’t always have to be around the people I live with and I can get some space and just be on my own like any normal adult in their home … that is enough to make me feel like a ‘normal’ adult.”
Views of Heather’s living room before and after the renovations. The construction took 11 months.
PHOTOS COURTESY OF ASPIRE
Home is where you feel safe and free to do what you want to do when you want to do it.
This opportunity for more alone time, Clark said, gives her more privacy and freedom. That’s especially valuable because Clark lives with three roommates.
Clark hopes more people living with disabilities like hers are able to live in accessible homes. She speaks up for people with disabilities, and is involved with advocacy organizations like Arc of Illinois, which provides resources throughout the state.
“Everything isn’t gonna be fixed in my lifetime for everybody,” she said. “But that’s the reason why I advocate so hard for not only myself, but for those who don’t have a voice. Because I want things to be better for the next generation of people that come after me with disabilities.”
The work is hard. But Clark, who aims to be a counselor supporting children with physical limitations, said she feels a duty to speak out because she has a voice and the skills to be heard.
“The thing that keeps me going is that if I don’t speak up for those people who can’t or don’t know how to speak up for themselves, then those people are just gonna get looked over, and nobody’s gonna speak up for them,” she said.
A view of Heather Clark’s renovated home in Zion, Illinois. The ramp allows Clark to access her home while in her wheelchair.
KATRINA PHAM / NEXTGENRADIO
Heather Clark says she loves fashion. The closet in her Zion, Illinois, house is fitted with a bar that will allow her to pull down the top layer of clothes so she can choose what she wants to wear for the day.
KATRINA PHAM / NEXTGENRADIO