Ellen and Emily are a mother/daughter duo from New York. You can often find them doing things together like watching their favorite TV shows, shopping, and cooking. Something else Ellen and Emily have in common is Larsen syndrome, a genetic physical disability that affects their joints and muscles. Ellen and Emily are both wheelchair users.
When Ellen first discovered she was pregnant, she says a sonogram revealed that her child would also have Larsen syndrome, and naturally Ellen had concerns about being a disabled parent of a disabled child.
“I had a lot of anxiety about it, thinking that she would resent me, or, you know, just knowing that she would go through certain experiences that I went through that were painful.”
Ellen even recalls an uncomfortable interaction she had with a stranger who commented on the fact that Ellen had passed on her disability to her daughter, Emily. “’Look at what that mom did to her baby,’ the stranger commented. I didn’t respond because I was so stunned that somebody would say something that cruel,” Ellen shares.
“No one with a disability should ever be made to feel guilty like that for having children,” says Emily who is now a writer and advocate for disability rights.
And despite the fact that the Americans with Disabilities Act of 1990 “prevents the child welfare system from presuming that disabilities are unfit,” still a report released in 2012 titled Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children, states that “children of parents with disabilities are removed at disproportionately high rates.”
Ellen and Emily want to encourage the public to not just support the rights of parents with disabilities because it’s the “right thing to do,” but “respect them, and recognize that people with disabilities can be great parents, too.”
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