Inclusive Design Through a Different Lens

Deborah Pierce had her eyes opened to the ideas of accessible design while working as an architect on public and commercial projects in the early days of the Americans with Disabilities Act (ADA). As she took on more residential projects, she saw how good design could not just solve problems for homeowners living with disabilities but also provide joy. She now focuses on inclusive design, which creates homes and buildings anyone can use. She wrote, “The Accessible Home: Designing for All Ages and Abilities,” which includes 30+ homes designed for people with a disability, from a child with cerebral palsy to aging couples to people with hearing impairments. HomeCare chatted with her about her personalized approach to inclusive design.

HOMECARE: What kind of clients do you work with?

PIERCE: I love that question because the simple answer, of course, is that my clients have disabilities or they think they may soon have disabilities. Maybe they’ve got a progressive illness like multiple sclerosis. But the people who hire me are also independent, active people who don’t give up and give in to their illness or disability. So they’re people who have a vision that they’re going to find a way to do what they need to do and they’re not going to let their condition stop them.

It may also be someone in a family situation—it’s parents who realize that the constant care of lifting, carrying and changing a child with disabilities is exhausting them and taking their attention away from the other children, or cutting into their enjoyment of the child with a disability. They may say “I want to be more than a caregiver. I want to be this person’s mother. I want to play with them. I want to have the siblings have time to be with their sibling so that they’re not just carrying things to and from, or bringing her to and from.” I think the more independence you can give a person with disabilities and or families who have a child with disabilities, the more you free up the parents and the siblings to be a mom, a dad, a brother or a sister instead of a nurse.

HOMECARE: When you start working with a client, what do you look for or ask them at the beginning of the process?

PIERCE: It’s been very difficult in the pandemic to fully get a sense of what people can and can’t do. I think about a couple I was working with recently, and he seemed very fit. He was a strapping big guy and he played football, but he had shoulder, back and knee injuries from sports and he can hardly move. As long as we’re just sitting and looking at each other through the screen, I have no sense about any of that. I really didn’t get it until he said, “Would you like some tea?” And he gingerly carried the tea; I thought he was going spill it. His fingers were shaking. He had to kind of lift his elbow of one hand using the other hand in order to move his arm.

So, I observe, but it’s important to build trust first. I can’t just say, “Hey, what’s going on with that arm?” It’s really important to be a good listener, and then I ask them to tell me what they want to be able to do that they can’t, as well as “What are the places in your house where you find that you’re, you’re somehow stuck or unable to do what you need to do.” If a person says, “I want be able to make a snack easily or watch the birds outside,” then maybe we make the windows taller even if that wasn’t the initial plan. I’m really asking, “How can we design around who you are and what you love, as well as mitigating the challenges that you face?”

HOMECARE: That makes it very much not one-size-fits-all.

PIERCE: Absolutely. I had one couple who plays chess, so we had to work in a chess table. We were putting in an elevator and we could have slid it back or forward two feet, but we were able to capture a little bit of space so that they had a game spot.

So many times, a woman whose husband has Parkinson’s or ALS will say, “Well, he never cooks so we don’t need to do anything in the kitchen.” I’ll say, “Well, what if something happens to you? Can’t we at least make it easy to get a snack or a cup of coffee? Let’s put a counter in with a space underneath it for the knees and if he wants to sit there and watch TV while you’re cooking, he can do that.”

HOMECARE: It sounds like you’re balancing the needs of the person with disabilities and their family.

PIERCE: It’s very easy to focus on the particular challenges and wishes of the person who has the disability regarding their home. But who does the heavy lifting? And what can we do to make them happy? There’s an example in my book of a woman who is losing her vision and her son has cerebral palsy. So we make a bathroom where she can take care of him and help him with toileting, showering, bathing, teeth brushing, all of that. But her husband said, let’s treat her like she’s a queen. She deserves something fabulous in this bathroom; even though we’re making it accessible, we need to give her something to make all of this worthwhile. So they put a crystal chandelier in it.

HOMECARE: What should home medical equipment providers or in-home caregivers be thinking about as they work with their clients?

PIERCE: I think it’s about finding a good way to solve their problems. One client of mine, a couple in their 70s, wanted to put in a bigger bathroom upstairs. They were going to use the guest room as his-and-hers bedrooms because she has a CPAP and it makes a lot of noise and he can’t sleep. But he has a walker and they wanted to put in an elevator or a lift without changing the way the house looks. And I said, “Well, you’ve got a big study on the first floor and it’s right next to a full bath, and if we can just open a door between the study and the bathroom, a person doesn’t have to walk down the hall to use the bathroom. And if you need a space to sleep during the day, you don’t have to go up and down stairs.” And they said they never thought of it that way. I think the question is really, “What do you want to accomplish and what are the different choices about how to do that?”

If they come in saying “I want to redo my bathroom,” ask them, “What is it about the bathroom that you want to change? What have you thought about doing? Have you seen any bathrooms that you really like? What would be a successful outcome?”

I worked with somebody recently, the woman’s husband was having a lot of incontinence, and the bathroom was filled with diapers—floor to ceiling—and all kinds of medicines. She said, “I need to get a new bathroom. This just isn’t nice for me.” I said, maybe we could do some built-in storage. Maybe we can pop an opening in the back of the closet, on the opposite wall and then gain a little more space—you’ll have a closet off the bathroom. That’s an example where you don’t need a new bathroom, you just need to make the one you have work better.

You know, people always want to think that they have an answer. They don’t want to feel stupid. If I say, “What do you need?” They’ll say, oh, I need a chair lift. So let’s back up and ask, “Where do you need to go in your activities of daily living? How often do you go up and downstairs?” … The reason that people would come into a shop or hire someone to help them with mobility devices isn’t always the reason they think it is.

HOMECARE: Are there trends happening out there? Or are there things that you’ve seen change?

PIERCE: I see people being more willing to talk about accessibility issues, and the acceptance of the term “universal design.” Universal design means it’s usable by the most people. Even if the term can be a little confusing, I think it’s made this feel a little more approachable and less scary. We’re not talking about human defects—we’re talking about human variety. We’re really saying, let’s look at design differently.

I’m seeing the idea of having a flexible room on the main level. Over the last two decades, there’s been the idea of a great room, a family room; now, with the pandemic, everybody needs a home office, a homework center. So the idea is there’s something I’m going to just call a flex room. It could be a home office, it could be a guest room. It could be where you stay if you had a ski accident and you’re in a hip cast for
six months.

There’s also a lot going on with appliances. I really urge people to spend some time going online and seeing what’s new in kitchen appliances, in refrigerators
in particular. The 

HOMECARE: Do you think people are starting to plan further ahead for future mobility issues?

PIERCE: I wish I could say yes! I don’t think so. People haven’t changed. Everyone’s invincible until they’re not. I see more of it because of who my clientele is. When I was starting my career, all of my clients had babies and they were looking at how to have a place where the kids could be nearby. And then they got to be teenagers and they wanted a separate bathroom. And now my clients are saying, “How can we deal with our aging bodies?”

Are people thinking about it earlier? The answer is they should, and disability can happen to anybody, anytime. Someone can fall on the ice, they can fall skiing. … No one plans this.

People even think it’s creepy to think about it. I don’t know how to get over that! One option is to look for really cool products. There are some nice grab bars that don’t look institutional, or that double as toilet paper dispensers. … There’s some really great hardware for kitchen cabinets that makes it easier to manage them, there are shelves that can be pulled down or hinged up to fold out of the way.

If I had a shop, I would absolutely be perusing the web all around the world and thinking what’s happening in Switzerland? What about Italian design? Are there other products that really could work here?