Spotlight on the Deaf-Blind Community

Deaf-Blind Parents Can

By Angela C. Orlando
Angela C. Orlando
Angie is reading a story from a braille book to Daniel's class.

On April 11, 2007, I found myself sitting in front of a family court judge about to hear whether or not I could continue raising my son. Only one claim was made against my ability to be a fit parent: I am both deaf and blind.

Daniel was born on May 22, 2001. I will never forget my first sight of Daniel. He was purple and slimy and looked like a corpse. Then Daniel opened his tiny mouth and took his first breath of life. And just like that my husband Greg and I became parents.

In December 2001, when Daniel was six months old, I rapidly began losing my remaining vision. At the same time, my cochlear implant seemed to be failing me. My legs were weak and I couldn’t walk without collapsing. My feet and hands became numb. I was in horrible pain–like pins and needles, but so much worse. By January of 2002 I was completely deaf and blind. I had no way at all to understand what people were saying to me or what was happening to me. I had no feeling in my hands or legs, so I couldn’t use tactile sign language. My family couldn’t even print letters in my palm. I couldn’t walk. I couldn’t even crawl. My family had to bathe me, dress me, feed me and lift me onto a potty chair. Daniel learned to walk before I could stand again.

Eventually someone got the idea to print letters on my face. This became our way of communicating for over two years. Through it all, Daniel never left my side. I was his play buddy. I was the person he shared his food with. I was his mommy. By the time he was two years old, I was again his primary caretaker. My health had improved and I was caring for Daniel on my own. Although I was totally blind, my auditory nerves had healed so the cochlear implant was functioning. I could hear environmental sounds. But without lip-reading I could no longer understand speech. I had regained full use and feeling of my hands so I was able to communicate with tactile fingerspelling and some simple signs. I also taught myself Braille so I could once again read.

Angie and Daniel
Daniel is checking out Angie's notetaker.

They asked me in court, “How can a deaf-blind person take care of a child?“ We stuck with the things that worked. When Daniel was still a toddler, I found it was easier to keep track of him if he was contained in a relatively small area. We had baby gates on both sides of the living room so he couldn’t get out. We read books together (our books have both Braille and print with pictures). We played with plastic animals, monster trucks, and super hero action figures. I taught Daniel how to make tactile pictures by gluing objects to paper or cardboard.

After my illness, my husband began to abuse me more and more often. He crushed my hands when I had trouble understanding his signs. He pushed me. He threw things at me. He kicked me. He would leave objects on the floor that I would trip over. So why did I stay? That’s easy to answer. I was terrified I’d lose my son. Greg told me if I rejected his abuse, he would take Daniel and leave. I believed, too, that no judge would ever give a deaf-blind person custody of a small child.

But I eventually realized I had to leave for Daniel’s sake. One night, Greg shoved me into the steps as we came inside the house. I hit the stairs, hurting both legs, bounced back against the wall, and finally fell back down the stairs. I lay crying in a heap at the foot of the stairs. And my five-year-old son came running over saying, “Mommy, Mommy, are you okay?”

I realized my five-year-old son was being abused too, even though he wasn’t the one being hit. He was watching his mother being hurt by his father. I knew I had to leave my husband.

The next day I sent an email to my mother asking for help. My parents arrived with a couple of vans and a handful of volunteers. We packed as much stuff as we could and hit the road while Greg was at work. He had no idea what was going on. We hid in a safe location until I could go to court and have a protective order issued against Greg. Then, I was able to go to my parents’ house.

The courts in Maryland and Ohio then argued over which state had jurisdiction to try the case. I had to testify about the abuse in December 2006 in Ohio court. The judge decided that the divorce would be settled in Ohio but custody would be done in Maryland. But Maryland scheduled another jurisdiction hearing for April 2007.

Greg and his witnesses testified about why I was an unfit parent. My disability was my only weakness. With the help of an interpreter, I testified about my life with Greg and all the abuse. I described how I take care of Daniel and the special things we do together. My witnesses were wonderful as they talked about the things they had seen me do with Daniel.

And then the judge dropped his verdict like a bombshell over my head: “Sole custody of the minor child to the mother.”

I remember saying, “No judge would ever give a deaf-blind parent custody of a small child.” This one did.

AADB in Action

Action

Spring Board Meeting

The AADB Board of Directors will have its spring board meeting at Gallaudet University on April 25-27, 2008. An exhibit on AADB and the deaf-blind community will be shown nearby to promote awareness and answer questions. For more information, please contact the AADB Office.

Presentations and Outreach

Chad Metcalf, Outreach Coordinator, was interviewed on how he uses interpreters as a deaf-blind person in the February 2008 issue of RID Views, the magazine published by the Registry of Interpreters for the Deaf. For information on getting a copy of this article, contact the Registry of Interpreters for the Deaf, 333 Commerce Street, Alexandria, VA 22314; 703-838-0030 Voice; 703-838-0459 TTY; office@rid.org, or www.rid.org.

He also presented about the deaf-blind community and his experiences as a person who is deaf-blind to approximately 75 hearing, deaf, deaf-blind and hard of hearing students at Stonewall Jackson High School in Manassas, VA. The students asked many questions about and learned how Mr. Metcalf and other deaf-blind people live and work independently. In addition, he demonstrated appropriate guiding techniques, and explained how deaf-blind people can use alerting devices so they can know when the doorbell or TTY rings, or when a fire alarm occurs.

Elizabeth Spiers, Director of Information Services, participated in a meeting with Tenacity Corporation. This company is currently developing a new product, which makes VoIP telecommunications accessible for all consumers with disabilities. She pointed out to the Tenacity executives ways to make their telecommunications products accessible to deaf-blind users. For example, she suggested that some products could include large print fonts, contrasting background colors to make text easier to read, and be accessible to Braille users. The company anticipates the products will be released this coming summer. People can visit Tenacity’s website for more information at www.tenacitycorp.com.

Ms. Spiers also presented about AADB and its services at a training for family members of and professionals working with deaf-blind teens sponsored by Connections Beyond Sight and Sound (Maryland Deaf-Blind Project). She explained how AADB can provide information on social and recreational opportunities at AADB conferences and local or state deaf-blind organizations, and answered questions on how people can prepare for and volunteer as support service providers (SSPs).

DCMP/AFB Description Guidelines

The Described and Captioned Media Program (DCMP) and the American Foundation for the Blind (AFB) have formed a partnership to develop guidelines for the description of educational media. The DCMP and AFB encourage teachers, parents, and other professionals involved with educating K-12 students who are blind, visually impaired, deaf, hard of hearing or deaf-blind to review the current draft of the guidelines. Visitors have the opportunity to participate in a short survey and leave comments and suggestions for improvement, which will have the potential to shape the final product, set to be released later this year.

Review the draft guidelines at: www.afb.org/descriptionguidelines.asp

Read more about the partnership to develop the guidelines at: www.dcmp.org/about/prelations/afb.aspx

AADB now has twenty lifetime members! We appreciate their strong support of AADB’s mission and activities.

Deaf-Blind Community Events

Northern Illinois University Institute on Deaf-Blindness
The Northern Illinois University’s Institute on Deaf-Blindness (NIU-IODB) program will be held on April 21 to May 9, 2008 in DeKalb, IL. For further information, contact Loni Sanders at lmsanders@niu.edu.
Training for Senior Adults
The Confident Living Program at the Helen Keller National Center will offer a training for older adults with vision and hearing loss on May 19 to 23, 2008. For more information, contact HKNC at ntthknc@aol.com, or at 516-944-8900 Voice, or 516-944-8637 TTY.
Rehabilitation Counseling with Deaf and Hard of Hearing Adults
Western Oregon University is sponsoring a four-week training program on June 23 to July 17, 2008 for professionals working with deaf, hard of hearing and deaf-blind people. For more information, go to http://www.wou.edu/rrcd and click on RCDHH, or call 503-838-8444 Voice or TTY.
First Annual Deaf-Blind Retreat
A hands-on experience workshop will be held for deaf-blind consumers, interpreters, and interpreter training program students on June 26 to 29, 2008. For more information, contact Joann Rushing, Chicago Lighthouse for the Blind, 312-666-1331, x3415 Voice; 312-666-8874 TTY; 312-666-8875 VP, or at joann.rushing@chicagolighthouse.org. Or contact Laura Thomas, Helen Keller National Center, 309-755-0018 TTY/Voice/VP, or at hknc5ljt@aol.com.
Seabeck Deaf-Blind Retreat
The 30th Seabeck Deaf-Blind Retreat will be held on August 24 to August 30, 2008 at Seabeck Conference Center in Seabeck, Washington. For more information, contact Tami Berk, Deaf-Blind Program, Lighthouse for the Blind; 206-436-2282 TTY; 206-436-2120 Voice; Email: DBRetreat@Seattlelh.org; Lighthouse for the Blind, Inc., Attn: DB Retreat, P.O. Box 14959, Seattle, WA 98114.
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