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Kati’s Story: Multigenerational Needs for Universal Design

Kati discusses how a universally designed home would have improved her family’s function after multiple health events.

Hey there! I’m Kati and I’m a third year occupational therapy student from Murphy Deming College of Health Sciences. This semester, I will be working with The Universal Design Project; a nonprofit organization focused on interprofessional collaboration to create universally designed homes.

I grew up in Gainesville, Virginia (roughly 40 miles west of Washington, DC) in a three-level, single family home. The home had 4 steps to enter as well as one flight of steps to reach all bedrooms and full bathrooms on the second floor. This is a standard home layout, so why am I telling you this? Because the design of my childhood home caused incredible stress and frustration for my multigenerational family after several different health crises.

First, let me fill you in on a few of  the health crises I am talking about. We’ll start with mine.

In February 2011, I was a junior in high school in the midst of recruitment for college soccer. One weekend while playing in a soccer tournament, I hurt my knee… BAD, right in the middle of our first game. After colliding with a player on the opposing team, I dislocated my left patella (also known as my kneecap) and damaged a lot of cartilage in my knee joint. Cartilage is best described as a firm, rubbery material that covers the ends of your bones and absorbs shock. Without cartilage, the bones rub together which causes intense pain. Pair that pain with a dislocated kneecap and you can imagine how incredibly excruciating this injury was. After the initial hospital visit and several orthopedic appointments, I was told by my doctor that I’d need surgery to correct the damage. I’d likely never play soccer at this level again. Luckily, with the support of my family, friends, teammates, and physical therapists, I recovered and played three awesome years at Shenandoah University.

When you have a severe knee injury, or a total knee replacement, you have to wear a knee immobilizer. A knee immobilizer is a brace that extends from your hip to your ankle and keeps your knee from bending so that it can heal properly. I also had to use crutches since I wasn’t allowed to put any weight through my leg. Wearing a knee immobilizer and using crutches made it extremely difficult to navigate my environment and complete my daily tasks. For example, going up and down the stairs to my bedroom and bathroom and getting in and out of my tub shower became increasingly more complicated. To mitigate this challenge, I had to use my parent’s walk-in shower (in my case, hop-in shower) and sit on a shower chair while I bathed.

I soon realized that I had taken for granted the simplicity of doing my daily occupations without an injury. The daily tasks that used to come easy to me were now more difficult because of the design of my home.

Next, let’s talk about my amazing mother.

In October 2003, my mom was diagnosed with thyroid cancer. In February 2004, she had surgery to remove her entire thyroid gland and then received radiation treatment to kill the remaining cancer cells. At this point in time, my mom was raising a 10-year old, a 8-year old, and a 5-month old. Flash forward 12 years to 2015, when my mom was diagnosed with stage II breast cancer and underwent a double mastectomy with lymph node removal a year later. The surgeon was able to remove all the cancer so chemotherapy or radiation treatment wasn’t needed. She then elected to have breast reconstructive surgery.

These surgeries were incredibly invasive and completely changed my mom’s anatomy and affected her occupational performance. My mom had limitations in upper extremity range of motion, deficits in overall strength, increased pain, and major fatigue. I vividly remember the self-care task that was most difficult for her during this time: Washing her hair.

First of all, my mom wasn’t allowed to take a proper shower for TWO MONTHS in order to keep the incisions and drains from getting wet to prevent infection. Therefore, my mom had to wash her hair in the sink and sponge bathe her body. Due to her surgeries , my mom’s chest muscles were injured. This limited her ability to raise her arms over her head. As you could imagine, washing her hair was nearly impossible, and quite painful. Eventually, she required assistance during this task.

My mom had to position her body in awkward ways in order to place her head under the sink or over the bathtub to get her hair washed. The design of the shower and bathroom did not accommodate my mom during this trying time causing a lot of frustration.

The last story I want to share with you is about my Grandpa.

In 2013, my grandpa had a major stroke which had lasting effects on his mobility and ability to perform ADLS with independence. ADLs are activities of daily living and include tasks such as bathing, dressing, toileting, and grooming. It was recommended by my grandpa’s rehab team that he would need 24/7 supervision as well as minimal assistance to perform his self-care tasks and functional transfers. It was also determined that my grandpa would use a wheelchair for mobility once he was discharged home. At the time of his stroke, he was living with my grandma in a 2 bedroom apartment in a 55 and older retirement community. My parents and grandma made the decision that my grandparents would move in with us so that we could provide the supervision and assistance that my grandpa needed. In order to accommodate my grandpa and his new health needs, we had to make modifications to our home. Unfortunately, these modifications didn’t happen right away because they were expensive. We did a lot of research to find the cheapest options and once we could afford it, we installed a stair lift so my grandpa could access his bedroom and full bathrooms upstairs. Additionally, we installed grab bars around the toilets in the bathrooms so he could transfer on and off the toilet with less physical assistance from us. Lastly, we bought ramps to cover the 4 stairs at the entrance of our home so he could get in and out using a wheelchair. 

The money and stress that went into our home modifications could have been eliminated if the architects and builders would have considered the needs of ALL people prior to construction.

Unfortunately, this is difficult for them to do because it’s not a part of their training, which is why collaboration between designers and people who understand function is greatly needed. 

As an OT student at The Universal Design Project, I’ve had the opportunity to reflect on how a universally designed home would have supported my entire family during various health events. These functional features would have benefited those of us experiencing difficulty with our function, while making it easier for the people that cared for us.  

Universal design is a term coined by the late Ron Mace and defined as “design that’s usable by all people, to the greatest extent possible, without the need for adaptation or specialized design.” Universal design features that are often used in housing include a stepless entry, a one-level open floor plan with bedrooms and full bathrooms, doorways wide enough for wheelchairs to fit through, walk-in showers with no threshold, and multi-height kitchen counters, to name a few.

If these features would have been implemented in my childhood home, I would have been able to get into the shower after my injury. My mom would have been able to wash her hair while keeping her body dry. My grandpa would have been able to shower with more independence. My mom, my grandpa, and I would not have had to navigate stairs, therefore decreasing fatigue and allowing for more independence and accessibility throughout the home. 

It’s imperative that architects and builders collaborate with healthcare professionals and people who understand disability when designing homes to ensure they are functional for all people, no matter what. Integrating functional features are helpful for a lifetime of function. Because at the end of the day, we are all just temporarily able-bodied

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