And It Begins: The Genetics Journey via 23andMe

As a person adopted at a young age I’ve lived most of my life with a lot of unanswered questions. I don’t know much about my birth mother except for the fact that social workers claimed that she would have made a good mother, she had hay fever allergies, and she was quite pretty–this according to a description of her, I don’t know what she looks like. For most of my life, thus far, I’ve been ok with not knowing much about her but I am growing increasingly wary about not knowing the things about her that effect me such as ancestry, carrier status, wellness, and traits. I’m tired of filling out medical forms and primarily answering “No” to questions about all manner of illness and disease. Tired of telling various people “No” when asked whether I’m Somalian, Ethiopian, or Eritrean. Tired of a general lack of knowledge about where I come from and how that impacts who I am. Hopefully, I’ll receive some answers through the DNA collection service, 23andme.

IMG_115723andme is the first and only genetic service that delivers reports directly to clients through an FDA-approved system. Once they receive this vial of my spit–yes all it takes it a vial of your spit–they will run tests that will yield information about my ancestry, carrier status of certain diseases, wellness, and other traits. I will finally know a little bit more about who I am, what I have, and what I may pass on to the next generation. This feels like the beginning of knowledge. It’s the key that will unlock information about myself that has been unknown for the better part of 35 years, information that I’ve increasingly become interested in knowing over the last five years. I’ve found that in my 30s, the greatest challenge of living with an adoption narrative–aside from the pervading issue of abandonment and being chosen, which are still pretty big–is not knowing some of the intimate details that make me who I am.

I have no problem with my inherited narrative of being adopted at eight months old by a married couple, the woman from New York and the man from Jamaica, who came together to give me a chance at this thing called life. They instilled in me a strong value system, raised me in a religious tradition that has imparted its own value system, and loved me and protected me from the moment they set eyes on me and still maintain that same level of love and protection to this day. I’m thankful they adopted me into their family which is now my family, a family that has made me a cultural Jamaican, a fighter, and a strong lover if not always by word, surely by deed. But at 35 it feels like I need to know more. More about who I am, the science and biology behind who I am. I want to know for me but also for who might be…

It dawns on me that these questions are important not just for myself but for my future children–when I decide to have them. I don’t want them to have the same life of filling out forms in which they answer “No” out of ignorance. This is why knowing my carrier status is so important. I also want them to know where they come from and not just to assume that because their mother is a black woman of Jamaican cultural heritage, that is their story. This is why knowing my ancestry is important. In general I want them to have a rich narrative about their life filled with the love, care, and compassion I came to know through my adoptive parents but also filled out with the knowledge of who they are because I know who I am.

That any of this filling out of a life narrative could happen from me spitting in a vial might be wishful thinking on my part, but I hope that I will come at striking distance of fuller knowledge of myself. Stay tuned as I start this journey on the verge of becoming knowledgeable about myself…

PS: A big thank you to my parents for two great gifts; first the gift of adopting me into their lives and now for this 23andMe kit.

 

 

Disabling Dominant Perspectives on Sexuality and Disability: A Reflection

For the past few days I have been in San Francisco at a Summer Institute on Sexuality held by San Francisco State University’s Center for Research and Education on Gender and Sexuality. I am attending this Summer Institute to jumpstart my research on sexuality and engage with the practitioners in the field. It has been both an amazing and terrifying experience. Studying sexuality–at least studying topics in sexuality in courses such as Feminist and Womanist Theology–within the boundaries of a theological community seems different from studying it within a broader context. I’ve learned about BDSM (Bondage, Discipline, Sadism, Masochism) as possible healing practice for people with early trauma; the differentiation between gay males and MSMs (Males Having Sex with Males which doesn’t necessarily mean they self-identify as gay) and the startling statistics about sexually transmitted infections in the MSM community; micro-aggressions against people who are transgendered; and surrogate therapy (a surrogate therapist works with a therapist and the therapist client to help the client navigate sexual issues through direct contact–you can figure this one out) as a bridge to healthy sexual experiences within and without relationships. These are just some of the topics we’ve covered in my time here, topics that I have held at a distance because I have never participated in them nor do I know anyone else who has. But yesterday something/someone cut across the distance. Tuesday’s experience was actually a continuation of a discussion on Monday about disability and sexuality and reconsidering our perceptions of the sexual nature of people with disabilities. Our time on Monday morning shed light on the fact that some people assume–consciously and subconsciously–that persons with disabilities are asexual. The assumption is that such persons are so involved in their disability that they have no sexual feeling or that their disability renders them incapable of having sexual desire or feeling. But this began to change when we watched a video entitled Sex-Abled: Disability Uncensored. In this video, people with various levels of disability discussed and joked about their sexual desires as something that exists just like it does for people with no perceived disability. This was my first time seeing something like this and I was blown.

Maria Palacios, Sins Invalid

Maria Palacios, Sins Invalid

On Tuesday we continued this discussion with Sins Invalid, a performance project that “incubates and celebrates artists with disabilities, centralizing artists of color and queer and gender-variant artists as communities who have been historically marginalized.” Two of the members of Sins Invalid, Patty Berne and Leroy Franklin Moore Jr., spoke to our group about the mission and work of the organization in general and disability justice and the power of sex in particular. At the beginning of class they handed out a pamphlet and a postcard-size Sins Invalid flyer featuring a young black man in a wheelchair being embraced by a black woman. I thought nothing of this image. Then the lights dimmed. Patty and Leroy presented clips of past Sins Invalid performances which ranged from Matt Fraser, a young man with phocomelia/short arms doing interpretive dance to the patronizing and patently offensive words of persons without perceived disabilities to Maria Palasios, polio survivor, feminist writer, poet, and disability activist who boasts a healthy sexual appetite and wants others to know, “Disabled People Are Sexy.” I was at a distance watching all of these people while slowly having my preconceived notions shattered and then he came on the screen. First I recognized the voice, the DynaVox, an electronic communication device for people with disabilities that affect their vocal ability. Then I recognized the face, a young black man with the defined nose and eyes of his father and mother. Then there was his body, usually enshrouded by his motorized chair but recognizable by its length and its sometimes erratic movement. Finally when the camera panned out and all parts were put together like a puzzle I realized, “It’s my cousin! It’s my cousin! It’s my cousin.” I audibly shouted this to my fellow Summer Institute participants and then I settled down into the space of tension I had been occupying throughout the institute, excitement and terror. Here I was watching my cousin Lateef, a poet, writer, and soccer player who has cerebral palsy. He was sitting in front of a mirror doing a dramatic reinterpretation of his poetry to the sound of his Dynavox. He slowly struggled out of his clothing as he spoke about his sexual and romantic desires. I entered a state of shock as I listened to him explain the guilt he felt after pleasuring himself, the Protestant guilt that threatens to consume us all. The pleasure and guilt around sexual pleasure, a cycle that repeats itself in his life as it does in all of our lives–at some point. His experience as a person with a disability or–“different abilities”–mirrors that of every human being but I, along with many, ignored or were ignorant of it. Now I could no longer ignore it, my cousin Lateef is a sexual being. Not to emphasize his disability but I have to for the sake of the argument I am trying to make here and that is that people with disabilities are not asexual–at least not all of them and it is unfair to categorize them as such by default. Many people with disabilities experience desire and, from my cousin’s depiction, it seems particularly painful because there are fewer people who can fulfill those desires and fewer still that give attention to the fact that persons with disabilities have the same intrinsic value and desires that we all hold to be significant. Between Monday’s discussion and Sins Invalid’s time with us, I had to confess that I was guilty of “asexualizing” people with disabilities. I subconsciously bracketed sexual desire from their lived experience, thinking that it is nowhere on their list of concerns and, being painfully honest, not something they can feel anyways–contingent upon their particular disability. I was particularly convicted during my time watching my cousin because we are not only spatially distant but spiritually distant in the fact that I have not connected with him because of my own issues. I’ve had trouble overcoming the gap in communication I feel between me and him. I’ve struggled with talking to him on the most basic level during the few times we do get to see each other. I’m utterly guilty of letting his disability dictate how I relate/connect to him and yesterday was just another reminder of the ways I have failed not only him but others. But yesterday was also the day that created a bridge for me to cross to get to him. Yesterday felt providential and put some purpose into my time here. I came here to jumpstart my research in sexuality. I wanted to put some meat on the bones of my doctoral interest and walk away with some new questions for that work. But my time at the Summer Institute on Sexuality has created a greater space for me to work in and a broader community to consider in my work. I’m staying with Lateef’s mom and dad for the duration of this trip (my aunt and uncle). They are a side of the family I rarely get to see because I live on the East Coast but my time with them has been enriching in ways I can’t begin to explain fully here. Seeing Lateef in the Sins Invalid clip, created a surprising space for a dialogue that isn’t normally open. I didn’t know I would see Lateef in that clip yesterday, and I wasn’t prepared to see him in that light but that I saw him and was able to bear witness to his feelings and desires connected me to him and this family in ways I may have never been connected if it wasn’t for the Summer Institute.