9 Ways Disability and Family Intersect
Hand holding up a cut out of a house with a heart. Courtesy, Canva
By Arielle Dance, Writer at Diversability
“It's been a struggle not to be seen as the disabled member of the family, but as an equal member who is more than her disability.” – Jennifer
Whether positive or negative, the impact family has on our development is immeasurable and incontestable. For disabled people, family members can be either the biggest supporters or hurdles in their journeys. Disability impacts family relations both in the way family must support disabled members, and in the way they interact with disabled people. For example, many disabled people lean on their family for caregiving, support with daily tasks, and even financial support at some point in their lives. Similarly, the impact someone’s disability has on their family is often determined by when they're diagnosed. A disabled child requires a lot of care and the support of their community. Similarly, becoming disabled as an adult, can impact family dynamics, romantic relationships, and friendships.
Knowing that family can consist of the people you choose, this piece is specifically about the families we are born into, raised in, or have married into. We asked members of the Diversability Leadership Collective about the relationship between their family and their disability. Jennifer Chassman Browne, Keisha Greaves, Neil Hughes, Puneet Singh Singhal, and Jay Trivedi shared their perspectives on the relationship between family and disability.
How being disabled impacted families:
Financial Support — Many disabled people rely on their loved ones to provide housing, supplemental income, medical insurance, and transportation. These financial needs can cause strain on their families’ larger expenses, putting them in debt or forced to make difficult decisions. When Jennifer was growing up, her single mother of two juggled working full time and being the primary caregiver for Jennifer. Alternatively, as a disabled parent, Neil has experienced years of debt and difficult financial decisions to support his family.
Caregiving —- Even as adults, some disabled people need the support of their families for bathing, feeding, help with daily tasks, and more. Jay’s parents drive him to and from work, attend medical appointments, and are instrumental in disability claims. Although caregiving could be temporary or long term, these needs impact the roles played and energy expended within the family. Jennifer’s family was extremely supportive of her, especially in her youth when she had to utilize a mobility device and relied on them for assistance at medical appointments.
Open up discussion about disabilities — A positive influence disability plays in some families is giving the opportunity for conversations about specific disabilities and the social impacts of being disabled. For Neil’s family, his disability has allowed his family to be more considerate of undiagnosed disabilities that have existed for generations. “Today my family talks about the hard things.” Because of his open discussions about disability, his children are more comfortable discussing and addressing disabilities.
Disappointment about expectations — Family members tend to have their own expectations and dreams for people. Some disabled people are unable to live up to the expectations of being in a relationship, building a family, or even completing small tasks around the home. Neil has family members who think he is being difficult. Jay’s parents have a hard time understanding why he is not in a relationship. While Keisha feels like her family does not understand what she experiences on a daily basis.
How family impacts the disability experience:
Forced to Mask — Some disabled people feel that they cannot be their full selves around their families and decide to mask their authentic selves. Masking happens when disabled people (specifically with invisible disabilities) choose to hide their disability either for protection or to seem okay for the sake of others. For Neil, “Indifference to my pain has been the social control. Masking it made survival possible. I learned that most people mask their differences and disabilities and would never try to find a community based on non-normative behavior or physical conditions. Isolation and anti-social confrontations is what I learned from my family. ” Neil explained how exhausting it is to mask. Alternatively, Puneet shared “I am just in full harmony and acceptance with my true self without any hiding or masking.”
Dismissive of experiences — Respondents generally felt that their families were dismissive of their experiences. Family members exclude them from activities since it’s too much of a hassle to include. Keisha feels like a burden because “they don’t go the extra mile to include me and don’t want to ask or know about how to do things because they don’t care”. Puneet shared that his family was dismissive at first and over time they seem to forget that he is disabled. Neil’s family constantly harps on the fact that he does not look disabled and therefore does not need the accommodations he requires of them.
Only Viewed as Disabled—- For those who were diagnosed as children, they may feel frozen in the image of those around them. Jennfier shared, “the relationships that were built early-on were focused on caring for me and when I wanted to do for myself, the familial relationships became less strong. It's been a struggle not to be seen as the disabled member of the family, but as an equal member who is more than her disability. I struggled to be seen as a person and not just a person with a disability.”
Feelings of Disconnection — Expanding on being viewed only as disabled, Jennifer explained that she feels less connected to her family as a result of her disability. She received the majority of the attention from her mother, since she required additional care. As a result, she believes her brother noticed this and felt that less attention was paid to him. Jennifer did not want the attention that she was receiving. For Keisha, those feelings of disconnection come from exclusion. She explained that her family members’ homes are not accessible for her mobility device so she does not go to family functions. “I feel left out… because they feel, oh well, Keisha will need accommodations.”
Feelings of Understanding — Puneet shared how his family has been his biggest support during his journey. “They help me whenever I struggle. Especially when I feel overwhelmed. They remind me to take a break and start fresh again…. Our relationships have evolved. We understand each other more deeply and stand by each other in terms of our needs and expectations.”
With these testimonials it is evident that being disabled impacts the disabled family member as well as those they love. If you are the loved one of a disabled person, think about how your actions and words will be received. If you are a disabled person, consider communicating openly with your family members about what you need and how their actions impact you.
About the Author:
Arielle Dance is a Content Writer at Diversability who identifies as a Black queer woman with disabilities. A Ph.D. in Mind-Body Medicine, Arielle is published on multiple online platforms and has a children’s book, Dearest One, which focuses on mindfulness and grief.
The author would like to thank Diversability Leadership Collective members Jennifer Chassman Browne, Keisha Greaves, Neil Hughes, Puneet Singh Singhal, and Jay Trivedi.