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Parents and Children

LightHouse Perspectives: First Ever Disability History Week in California Schools

Christina Mills, director of the California Foundation for Independent Living Centers sent out an announcement about Disability History Week in California schools. This is a first for public schools in our state, thanks to the hard work of a team of disabled youth organizers.

Click to hear to read the flyer: Announcing Disability History Week in Californai schools.

The photo banner along the top of the flyer includes portraits of Helen Keller, Ed Roberts, Paul Longmore, Lois Curtis and Frida Kahlo.

When it comes to history in the blindness community, Helen Keller is one of the best known figures. But many visually impaired people are ambivalent about the Keller legend.

In Blind Rage: An Open Letter to Helen Keller, Georgina Kleege delves into her complicated relationship with Keller. Kleege re-imagines Keller’s life story while posing hard questions to Keller as she retells true stories from her own life as an educator and artist in contemporary society. Georgina Kleege is a visually impaired novelist and Professor of English at the University of California, Berkeley.

The LightHouse recently called for nominations to rename our Enchanted Hills cabins after important persons in blindness history. Thanks to your suggestions, we compiled an impressive list of figures who are not widely known, but deserve further recognition and study.  In this list, we have the Turkish painter Esref Armagan, the British Thomas Rhodes Armitage, and the famous American abolitionist Harriet Tubman to name a few.

And today, after chatting with LightHouse CEO Bryan Bashin, I learned about Jacques Lusseyran, a blind resistance fighter in World War II. Bryan is enjoying Lusseyran’s memoir, And There Was Light.

As our public school teachers build their curriculum from one Disability History Week to the next, year after year, I hope that they really push the envelope and explore all types of writing (like Kleege’s creative nonfiction on Keller), many different voices (artists like Armagan) and many lesser recognized men and women. (Many people do not know that Harriet Tubman became blind while continuing to fight for freedom.)

The following is a short list of links to disability history information and educational materials. I have added a couple specific to blindness.

Disability Studies for Teachers.


American Action Fund History of Blindness Timeline

The Unseen Minority: A Social History of Blindness in the United States

–This post was written by LightHouse Resource Specialist Amber DiPietra

List of Resource Centers for Parents

Back-to-school time brings about a new phase in kids’ lives and, if you are a parent of a visually impaired child or a child with any disability, the start of the school year might mean you have to do your homework! If you are searching for new opportunities and solutions for your child, this list of resource centers for kids with disabilities and their parents will lead you to support groups, trainings on Individual Education Plans, public policy updates, disability rights action items, social networks, education scholarships, adaptive tech grants and more.

Visit the organizations in your area and sign up for email newsletters for centers in other areas. to maximize the info you receive. There are many programs and services that parents do not know about–get in the loop so it it becomes easier to know where to look and what to ask for!
Rowell Family Empowerment of Northern California (RFENC) www.EmpowerYourFamily.org

Matrix Parent Network & Resource Center

Parents Helping Parents (PHP)

Support for Families of Children with Disabilities

Family Voices of California

Exceptional Parents Unlimited

Team of Advocates for Special Kids (TASK)

The Family Resource Centers Network of California

California Association of Family Empowerment Centers

Technical Assistance Alliance for Parent Centers

Visually Impaired Parents Group Starting at the LightHouse.

Last week, we blogged about custody issues for blind parents. These problems can arise when hospital staff and child welfare officials bring certain biases about blindness to their interactions with new parents. Being a strong self-advocate is important in facing these societal challenges, but having links to other families and learning from other blind parents is vital.

So, we are thrilled to announce that Laura Rodriguez is starting a blind and low vision parents’ group at the LightHouse! Laura, who has grown up in the LightHouse community, is now the proud mom of one-year old Sam.

As a teen, Laura was an Enchanted Hills camper and she now enjoys going back for Family Camp once a year to connect with other blind parents. However, Laura wants to create a way for families to come together throughout the year.  She feels that a visually impaired parents’ group at the LightHouse will provide a space in which members “won’t feel as though they need to overcompensate” as parents.  Instead, group members can confidently share their own unique strategies and brainstorm around common parenting challenges.

The blind parents’ group at the LightHouse will also double as a play group, of course.  Parents are welcome to bring their children to regular meetings. Plans for off-site gatherings at kid-friendly sites around the Bay Area will be arranged once everyone has had a chance to get acquainted. Because some kid-oriented places are not super accessible to blind visitors, going as a group will be an added help in getting accommodations on-site.

As soon as five parents sign up, meetings can begin at the LightHouse on weekends. Just go to http://www.meetup.com/viparents/.

Parents must become Meetup.com members in order to join the group. If you have questions, contact info@lighthouse-sf.org.

Please spread the word about the group to anyone who might be interested. We are really excited to bring more family networks to the LightHouse!

Custody Challenges for New Blind Parents

Baby Mikaela has recently been returned to blind Kansas City parents Erika Johnson and Blake Sinnett. She was taken away from the couple only a few days after her birth. A lactation nurse felt that the couple was unfit to care for the child when Johnson, the young mom, fumbled at her initial attempt to nurse her baby. Mikaela is the couple’s first child. After two months, she has finally been returned to Johnson and Sinnett. Now, breast-feeding is no longer an option, the couple has been robbed of precious time with their new daughter and they are pursuing legal action

Sighted and visually impaired parents from around the country rallied to support the couple. Kansas City moms expressed their outrage on this parenting blog. These mothers wonder why the lactation nurse did not offer some guidance for the 23-year-old mom. This is, after all, the purpose of a lactation consult in the obstetrics ward.

A few years ago, similar snap judgments were made by hospital staff in the Bay Area. The trouble started when the blind mom in this case requested that a neonatal nurse pay a couple of house calls after the family went home, to ensure that the new baby showed no signs of jaundice. Instead of replying to this accomodation, hospital staff called county officials, who then demanded that the couple sign paperwork to give up custody of the child. Margie Donovan, blindness advocate and LightHouse board member, stepped in to assist the couple in asserting their rights. Listen to the NPR story here.

This week, Disability Rights California  announced that California Senator Roderick Wright has proposed bill SB 1188, which adds a section to the California Family Code to protect disabled parents from biased custody decisions. Attorney Margaret Johnson, who is advocacy director for Disability Rights California and a disabled parent herself, said, “Parenting is a fundamental right and this bill will help to ensure that parents with disabilities do not face discrimination. By increasing the burden of proof on the parent who raises disability as an issue, rights of disabled parents are protected and unnecessary litigation is avoided.” The LightHouse hopes that this new bill will go a long way towards creating a more hospitable environment for blind parents in local hospitals.

Not all labor and delivery staff take such discriminatory actions. The LightHouse is pleased to report that in recent weeks, we have been in contact with both California Pacific Medical Center and Kaiser obstetrics staff. They let us know that they offer classes, including CPR, to all parents – sighted and blind. The LightHouse was happy to provide both CPMC and Kaiser with Braille copies of their discharge info, which includes tips for new mothers and fathers.