NORD’s Living Rare, Living Stronger Forum: Overcoming Ableism While Parenting

The National Organization for Rare Disorders (NORD) recently held its Living Rare, Living Stronger Patient and Family Forum on June 26, 2022. This event took place both virtually and in-person in Cleveland, Ohio. This forum is an important annual event for the rare disease community and serves as a valuable opportunity for discussion, networking, and recognition of achievements in the space. The event featured several different speakers and presentations, one of which was titled “Overcoming Ableism While Parenting.”

This session featured Kara Ayers, PhD, as speaker from the Cincinnati Children’s Hospital Medical Center. Dr. Ayers both researches the experience of parenting with a disability and also lives it herself as a person living with osteogenesis imperfecta, a rare disease of the bones. Her husband also has the disorder. One in ten parents that live with their children have some form of disability.

Dr. Ayers used an image of a smokestack as a metaphor for ableism, with ableism being presented as a pollutant in the air that is all around us. This is an apt comparison, as ableism is present throughout our society and culture; most of us have been indoctrinated by it to some degree.

“Many times it’s couched in an argument of safety.” – Kara Ayers, PhD

She also cited this example of an ableist statement:

‘No offense, but I don’t think that people with disabilities should have children.’

She noted that this statement carries the assumption that genetic disabilities are inherently bad and should be avoided no matter what.

“This is often a dominant belief in our medical system as well. It’s often accepted as an assumption.”

Ableism is in part a perspective that is learned, meaning that it can also be unlearned. It is pervasive in the medical system and can even be found in disabled communities. Experiences and places that are not accessible to disabled people perpetuate ableism. Ableism does not have to be intentional for it to be harmful.

While disability is rarely portrayed in media, Dr. Ayers notes that representation of disabled parents in particular is almost unheard of. While ableism is still a major obstacle, there are more tools and options our there for disabled parents to help them navigate a world that is hostile to their needs. Ultimately disabled people need the freedom to make decisions about parenting. Dr. Ayers encourages disabled parents to know their rights and seek out their community.

Disabled parents also need others, including family members, to presume competence in their own ability to parent. The maintenance and effectiveness of their own treatment is also important so that they can be present for their children. They may also need accommodations to support their children’s needs in environments or situations that are not accessible.

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