I am a person with disabilities. I am deaf, with traumatic brain injury, post-traumatic stress disorder, and manic-depressive (bi-polar) disorder. I was also working as a program founder, manager and career counselor at UC Berkeley when my unborn second child was found to be coming with an extra chromosome, Trisomy 21.
I mention my job at the time as UC Berkeley is at the heart of the Disability Rights Movement. Ed Roberts and the “Rolling Quads” started the Disabled Students Union, which went on to create the first Center for Independent Living, which in turn created World Institute on Disability and a host of related disability rights and activist groups, all of which profoundly changed the opportunities and rights for all of us who have a disability.
The concepts of “social model” and “medical model” of disability also sprang from UC Berkeley. That is, that the “medical model” of disability seeks to cure or fundamentally change disability. It sees disability as abnormal, broken, something that needs fixing. The social model of disability sees disability as a natural part of the human experience, lending diversity of living and expression to the sum total of who we are as a human family. The social model of disability does not seek a cure for disability, as it doesn’t see disability in and of itself as being broken or need of fixing. Rather, the social model of disability embraces the concepts of universal design, inclusion and access for all.
I was working within this framework and culture when I received my daughter’s diagnosis.
Now, you would think that with all of my knowledge of disability, disability culture and so forth that having a daughter with Down syndrome would not make me blink, right?! Oh, but no. It did.
I did more than blink – I was scared, sad, full of grief. My PTSD hit me hard – I was sexually abused growing up, a common experience among us deaf and disabled girls. I was terrified that the same would happen to my daughter. I had struggled for access, been excluded, abandoned and rejected for large chunks of my life – I had no way of knowing what my daughter’s experience would be, if my own (sans intellectual disability) had been so bad.
Added to that, while I was something of an expert on disability in general, I knew next to nothing about Down syndrome. There were no people at UC Berkeley, after all, with Down syndrome or other intellectual disabilities. All I knew about Down syndrome was that people with Down syndrome seemed to sport a lot of bowl hair cuts and made me nervous because I thought they would need something from me that I didn’t want to give.
But with my unborn daughter coming with Down syndrome, I needed to know everything I could. I reached out to my doctors and the hospital specialists, all of whom offered nothing except their opinions that people with Down syndrome are “burdens for life”. They gave me plenty of information on termination, nothing on life lived with this extra chromosome.
This is why I believe the Down syndrome Diagnosis Network is so crucial. All parents seeking information about their child’s syndrome need to receive it, and it needs to be information that was created by families, for families. Only other families can understand the feelings that are present, and why the narrative surrounding a diagnosis needs to change.
Doctors and other providers who work with families of children with Down syndrome need more access to current, accurate and relevant information regarding Down syndrome – and DSDN helps provide that. The DSDN has over 80 local partnerships where they provide their materials and resources to organizations across the country. You – or your local organization - can request DSDN brochures and leaflets, and DSDN is happy to send you or your local organization their materials to distribute to your local OB-GYN, Pediatrician.
Use this World Down syndrome Day to get started: request materials of DSDN, and work towards distributing them to all of your local organizations that have a relationship with Down syndrome, in whatever form. Each one teach one, get the word out. Let’s make it so that every mother and family receives the support and information that they need when expecting or having had a child with Down syndrome.
Go here to request: http://www.dsdiagnosisnetwork.org/materialrequestsforparents
You can connect with Meriah through her blog- A Little Moxie: www.meriahnichols.com; Meriah also facilitates http://www.adayinthelifewithdownsyndrome.com. You can add your own story as a way of participating in World Down Syndrome Day!