Editor’s Note: Jenny is the mother of two children with special healthcare needs and a Patient & Family Advisor at her local children’s hospital. In addition to her lived experience, Jenny calls upon her professional experience as a social worker to help her write blogs from her home in Wisconsin. – Cara L. Coleman, JD, MPH, Associate Editor, Pediatrics
Family Connections with Pediatrics
The first time I saw a Pavlik harness (used for babies with hip dysplasia), I thought it looked like a torture device. We had just finished our fourth meeting with the orthopedic surgeon, and he said our infant daughter would need to wear this full-body hip brace for the next 3 to 6 months. We knew this was the right thing to do, but what we did not realize was that the hip brace could not be worn over clothes. And of course, none of the clothes that we brought to the visit fit over the brace. So here we were in the middle of January in Wisconsin with our new baby wearing only a diaper, a pair of socks, and a Pavlik harness for the drive home.
As I placed my daughter to sleep that night, I wondered if she would ever walk, if she would need to wear leg braces forever. I felt confident that we could navigate those challenges if needed, but what really kept me up at night was worrying if she would fit in, if her peers would accept her even though she didn’t look like them. What would her classmates say on the first day of school if my daughter showed up wearing a homemade sack over her legs instead of regular clothes?
This month’s Pediatrics speaks to this worry in an article entitled “Acknowledging Impact of Clothing Barriers on Disabled Children Experiencing Social Exclusion” (10.1542/peds.2023-065159).
Why do children with disabilities experience social exclusion?
One reason that children with disabilities may feel excluded is because of differences in the way they look. This includes the clothes they wear. Social exclusion can lead to the following outcomes:
- Trouble making friends
- Lower grades in school
- Poor mental health
What is adaptive clothing?
Adaptive clothing refers to clothes made specially for people with disabilities. According to the authors, adaptive clothing should be accessible, useful, and stylish. There are already several adaptive clothing lines in the US ranging from large-scale options at popular stores to smaller independent brands. Key aspects of adaptive clothing include:
- Features that aid in dressing and undressing such as snaps, elastic, and magnetic closures
- Items with different entry points and extra closures for people with limited movement
- Special fabrics that feel more comfortable for children with sensory processing issues
What are some benefits of adaptive clothing?
- Social acceptance
- Feelings of inclusion
- Increased self-worth
- Better mental health
What are some barriers to accessing adaptive clothing?
- Not available in all stores
- Cost is too high
- Cannot use Flexible Spending Accounts (FSAs) or Health Saving Accounts (HSAs) to pay
- Have to choose between function and style
What can you do with this article?
- Share this article with your child’s care team. If they provide you with any medical equipment, ask if they can also help you access adaptive clothing.
- Advocate with your insurance company to allow adaptive clothing to be covered by FSAs/HSAs.
- Support small businesses that make adaptive clothing for children with disabilities.
- If you live near a university or technical college, see if they have a textiles or fashion design program. Reach out to the staff and ask if they have any courses that highlight the value of adaptive clothing for people with disabilities.
- Work with community groups to launch a design contest that centers the ideas, voices, and styles of children and adolescents with disabilities.
- Join a local activist group to fight against ableism. A child with a disability should not have to choose between having clothes that feel good and fitting in with their friends.
