A couple of years ago, I learned that the genetic research project at Gallaudet was easy to participate in. All I had to do was answer a bunch of questions and then have a kit sent to me to be done at my doctor’s office. Best of all, since I was a Gallaudet alumnus, this would be at no charge to me.

Sure, I knew how other researchers could use the information learned as part of this genetic research for unethical purposes – who can forget A.G. Bell? I also knew that if sterilization of genetically deaf people ever took place again, my family and I would be at extreme risk. I have never supported the medical view of “deafness” (insert sarcasm) as something that requires repair and annihilation; I’m of the school that being deaf is a blessing, a cultural identity.

So why in the world would I want my genes tested?

The primary reason: curiosity. My parents are deaf, as are several other relatives in my family. I’d always told people that I was deaf because of my father’s side of the family, since my mother’s family had no history of any other deaf person. But I had nothing to back this up; it was all speculation. I’m an only child, like my mother, so I had no idea of whether my siblings would have been deaf or not.

My husband is third-generation deaf, and we assumed that if we had children who were deaf, it’d be genetically because of his side of the family. Still, we weren’t sure – not that the test results would have changed how we raised our children whatsoever; we would never have allowed the results to change our perspectives of how awesome children are. My husband and I went back and forth on whether to do the testing or not, and finally decided to go ahead and get tested. I was about six months pregnant with our first child at the time.

A year later, we got the test results. By now, our daughter had been born deaf and was well on her way to being a delightful bowlegged terror in pink (or purple, depending on her mood) slippers.

Without going into all the biological mumbo-jumbo, there are approximately 400 genes that can make a person deaf. Both of my parents had at least one changed copy of the same gene that caused them to be deaf – which stunned us, for a simple reason. We didn’t expect my mother to also have the gene. My grandmother, who helped raise me and taught me much that I hope to teach my children, has always carried guilt for “causing” my mom to be deaf. Never mind that my grandmother is a fantastic woman who completely embraces our cultural identities as Deaf people. She is first and foremost a hearing person, and was raised to believe that deaf people were “handicapped.” It’s only understandable that she had this guilt for so many years; it was how she was raised to think. Mind you, she has never really talked about it because she never wanted any of us to feel negatively about being deaf. She loves us exactly how she should: unconditionally, happily and wonderfully.

We had always suspected Mom was born deaf because of a surgery my grandmother had during her first trimester of pregnancy. But since my mother has at least one changed copy of the gene, this blew our suspicions out of the water. However, this also meant that at least one of my grandparents also had the gene. Which one was it? My mother immediately got tested.

She got her results early this year and we all were surprised again. Both my hearing grandparents were carriers of the gene. What this meant was that my grandmother’s surgery had absolutely nothing to do with my mom being deaf; it simply was, as my grandmother said, “God’s plan.”

My mother, who grew up oral and didn’t learn sign language until she was 17, still gets labeled as “hard of hearing” – not that there’s anything wrong with this – by people. I’ve had many people tell me my mom can’t be Deaf because she can speak well. I’m used to the astonishment on their faces when I tell them my mother is audiologically deafer than me.

Never mind that no deaf person should have his/her cultural identity challenged by anyone. My mother struggled for most of her life trying to figure out if she belonged to the Deaf community or to the hearing community. She has always been on the margin of either, even though she is the Deaf mother of a Deaf child and a Deaf grandchild, married to a Deaf man, graduated from a deaf school, and attended a deaf university. The community simply couldn’t accept that someone who could speak well and hear on the phone, and didn’t have native-level fluency in ASL could be audiologically and culturally deaf. This constant doubting of my mother’s identity took its toll on her.

It wasn’t her fault she grew up not knowing sign language. It wasn’t my grandparents’ fault, either, because Mom was born during a generation where people were told that sign language wasn’t a good thing. The point is, my mother continued to struggle with the labels thrown upon her even after she had assimilated into the Deaf community – the community she continues to love today.

With the test results, over 50 years of guilt were washed away for my grandmother.

And after five decades of struggling with her identity, my mother can finally medically, culturally, and happily identify as Deaf. It’s in her – and my – blood, after all.

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