Public Attitudes and Advocacy, Uncategorized

3D Printing Ultrasounds..Wow!

As most of you know, we are expecting our third child in August. Becoming a mother is one of the most exciting and wonderful experiences. Each pregnancy is a little bit different and special for me. Even though we’ve “done this” now a couple of times, each milestone of the pregnancy is still exciting and new-confirming that you are pregnant, hearing the heartbeat for the first time, and getting that first ultrasound. Even though we don’t really get get much out of the ultrasounds since we can’t see the screen, they are still exciting events. I wish I’d have had the chance to have an ultrasound like this one somewhere along the way. This is an incredible use of science and technology in such a meaningful way. Everyone should go support Huggies for making this possible too. 🙂

Public Attitudes and Advocacy

A Parent’s Worst Fear

Okay, don’t get too excited…today you get a double post as I’m transferring some posts from our former blind parent blog Home is Where the Hartle Is which is still active if you want to take a look, but won’t be one I’m using anymore. I’ll be moving a few relevant posts to this one over the next few weeks as I consolidate things. So, with that, I give you a post I wrote about a year ago as a testimonial submission for the Maryland state legislature. Just as a side note , since writing this, the bill passed and parents can no longer be denied custody of their children on grounds of blindness only. big Victory!

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Last Thursday, I was slated to go and testify at a hearing in Anapolis before a committee of the state legislature. The hearing was about protecting the rights of the blind and other disabled parents, specifically with respect to custody disputes. Due to a big snow storm however, the entire state was virtually shut down and the hearing postponed. In any case, I’m posting what I submitted as my testimony for the record. I thought it may be of some interest and a good way to help draw attention to a scary reality many parents with disabilities face on a regular basis. Currently in the state of Maryland, and others, parents can lose custody of their children for no other reason than that they have a disability. No proof is required to show that the child or children are at any risk or danger either. While my husband and I have never faced any real threats of this, it’s scary to know that this reality is out there and does give one pause to fear what someone’s lack of understanding of the capabilities of a blind or disabled parent could do to a family. For example, if one of my children had to go to the ER just for a typical childhood injury (e.g., falling from a tree, bike crash, etc.) and a healthcare worker believed this accident came as result of my not being able to see and provide adequate supervision, my children could be removed from my custody with no proof being required-even if the accident was purely that, an accident and had nothing to do with my ability to see or not see. IN most cases, health workers or social service workers have to at least provide some kind of evidence before a child is removed from the home. Anyway, there is so much more that could be said and argued on both sides of the matter, but for what it’s worth, here is what I submitted.

Four years ago my husband and I became parents for the first time with the birth of our daughter. Two years later, we were blessed with our son. Becoming parents has been the most amazing, rewarding, challenging, and life changing experience. For all intents and purposes, we’re just your typical average middle class “all-American” family. My husband works for the Department of Education in Washington D.C. while I stay at home full-time with our children. WE own our own home, take our children to playgroups, lessons, church, and school. WE resemble many families in our similar circumstances with the exception that we do not have a minivan or SUV parked in our driveway because, both my husband and I are blind.

Our children are healthy, smart, and thriving. They no nothing different except that their mommy and daddy use a cane to get around, have to touch things to see them, or that we take cabs and trains rather than drive places like our friends. What my children also do not know is the ever-present fear itching at the back of our minds that at any time, for any reason, our children could be taken away from us purely on the basis of our disability. Thankfully, our parenting has never been called in to question, but the threat is real and does exist.

WE worry that a future visit to the emergency room for a bike accident or fall from a tree could result in us being deemed as unfit parents. A playdate at the park could result in the temporary loss of custody because of a “well-meaning” citizen calling social services in concern for our children’s safety as we cross a busy street together. I hope I am wrong in fearing that such things will ever happen, but I’ve felt the staring looks from strangers and heard the callus whispers of concern or disgust that we as blind individuals would bring children into this world or subject them to such a life. I’ve been literally yelled at on the bus on several occasions to be careful not to sit on the baby I’m carrying on my back as I take my seat (as if I could forget the twenty pounds I’m carrying). The misconceptions and ignorance is real and all around us. People cannot imagine how someone with a blindness disability can take care of a child, yet it can be done and has been demonstrated by many with grace and skill.

In our legal system, individuals are declared innocent until proven guilty. Yet, present legal practices allow children to be taken from the custody of their blind and disabled parents purely on speculation with no real evidence that the child is at any risk or harm—thus declaring these parents as guilty until proven innocent. In many cases, disabled parents have a difficult time fighting legal battles to prove their parental competency because of prejudice or social stereotypes that inhibit others from being open-minded to alternative techniques or forward thinking practices about the capabilities of persons with disabilities.

I will agree that there are situations wherein a parent who is blind or otherwise disabled may not be the most fit to care for his/her child. These circumstances would most likely come as result of the individual lacking sufficient skills or capacities to care for him/herself and their child appropriately. In such cases, I would fully support the removal of a child from these circumstances. However, there should be sufficient evidence that the child’s best interest is in jeopardy and legitimate proof, not just speculation based solely on a disability label. The practice of making blanket-statements or the “one size fits all” approach should not apply.

AS a blind person, I use a myriad of alternative or nonvisual techniques to carry out my activities of daily living, manage my home, and care for my children. I travel competently with a long white cane and know how to use public transportation, take cabs, and employ drivers. I hire readers to aid me in my grocery shopping and reading mail. I use nonvisual techniques such as bells on my children’s shoes, baby carriers, child-leash backpacks, and other strategies for keeping track of my children in public spaces. I know how to cook safely on a stove and with an oven so as to provide meals in a safe manner for my family. I communicate regularly with my daughter’s teacher and school electronically to keep up on handouts and progress reports. I communicate with pharmacists and physicians when necessary to make accessible medicine dispensers to administer appropriate doses of medicine to my children when they are sick. I utilize a host of technologies that provide me useful information for caring for the needs of my family.

I cannot anticipate how I will accommodate for, or handle every situation in the future as I rear my children, nor should I have to justify myself, have all the answers right now for every circumstance, or defend my practices to maintain my rights as a parent when most parents are not held to the same scrutiny in as much as their children’s best interests are not in question. I know I have the skills to do so and that I am the most qualified person to be raising my children. I support the call for stronger legislation that will prohibit the practice of using one’s disability as reason enough for terminating one’s parental rights. And I encourage better practices that promote the rights of such parents and families to co-exist in equality and harmony in our society.