Deafblind People Are Blind and Belong to the Blind Community, Too!

by Marsha Drenth

From the Editor: As we strive for diversity, we must do more than push away those who may initially seem different from us. We must seek them out, and not just invite them to be present but encourage and welcome their full participation. Like most things of consequence, this is easier said than done.

Marsha serves as an officer in our Deafblind Division. As you read her article, think about how many attitudes she finds reflected in her treatment by some Federationists that we find objectionable in the way we are treated as blind people. It would be wrong to suggest that the difficult attitudes she encounters are representative of the Federation any more than it would be fair to suggest that a comment by one Federationist means this is the position of the Federation. The comments she has gotten can certainly serve to help us think twice about the things we say and whether our actions are consistent with the Golden Rule by which so many of us try to live. Here is what Marsha has to say:

I grew up immersed in the blind community. Not only was my mother involved in the National Federation of the Blind, but both my grandparents, Beatrice and JQ Sutherlin, were instrumental in the creation of the National Federation of the Blind of Texas. My earliest memories are of marching and singing "Glory Federation" while walking down the street during the March on Washington, which we now call Washington Seminar. It was the summer of 1980, and I was three years old. I did not yet understand the words, the meaning, what the song meant in our movement, and how it would impact my life. Other memories include playing with other children during chapter meetings and before a Texas NOPBC division meeting. My grandparents lived every day as the most independent individuals I knew. I learned Braille because my mother and grandmother fought with the Dallas Independent School district for years so that I would have an equal education. I eventually attended the Texas School for the Blind (TSBVI) in Austin. Through much of my early years and young adult years my vision was up and down. After a new surgery or procedure, I could see better, or with new glasses I could see better, but those were only temporary fixes. At the school for the blind I learned Braille, although I was a naughty student and threw my books at my teacher because I did not want to learn it. During this time, I had a lot of anger and negative emotions regarding vision loss, but being only nine, I had no idea of how to properly express my feelings. At TSBVI, I also learned orientation and mobility with cane travel, activities of daily living, and how to use assistive technology. Like others in their teen years, I rebelled and wanted nothing to do with all of those older, Caucasian blind folks, since I could not imagine what I could possibly gain from attending those meetings.

Fast forward past the birth of my three children, and suddenly most of my remaining vision was gone. After several years of coming head to head with my vision loss, the roller coaster finally stopped. All of those skills that I reluctantly learned at the school for the blind were taken out of deep storage and dusted off, because now I really needed them. In 2004 as an adult and parent, I was now dealing with some of the same challenges as my parents. My son Bryan was born with the same eye condition in addition to some extra disabilities, and just like my own educational hurdles, the district wanted to fight us on every additional skill that I knew was important. With the help of my mom and Tommy Craig, I started to travel to different places in Texas to drum up other parents with blind children. In 2006-07, the Texas Parents of Blind Children Division came to fruition. During this time, I served as the Dallas Chapter secretary and volunteered to help the affiliate in other ways. Several years later I moved to Baltimore and lived there for one-and-a-half years, working with parents, teens, children, Youth Slam, technology, and legislative work. In 2009 I met my now husband Joseph and moved to Pennsylvania.

Since then I have served on both local and national boards for guide dogs and the deafblind. I finished my social work degree at Temple University and have been working with blind and deafblind individuals for the past five years. I use Braille every day, and I continuously promote its use and the value of learning it. I have traveled independently for both work and pleasure with either a guide dog or a long white cane. My household consists of four blind people, which is unique in and of itself. I lovingly refer to myself and others who grew up in the NFB with blind parents, singing the songs, going to chapter meetings, state conventions, and national conventions as NFB brats! So now what part of me isn’t blind?

Because once it was revealed that I had a significant hearing loss and I started to identify as deafblind, things changed. I wasn’t just a normal blind person anymore. I now was a person who could no longer hear in large crowds. I now needed sign language interpreters at national convention in order to keep up with the speeches and presentations. I now used equipment that helped me hear a person’s voice directly in my hearing aids. Sometimes I now need to use relay for phone calls, and I much prefer facetime calls over standard phone calls because of the clearer audio. Now I use support service providers (SSP) to help with my equal convention experience. Now I request the transcripts of presidential releases and speeches. Now I use haptics, touch signals, or pro-tactile to receive additional information about the people, places, and things around me.

What changed about me? I am now a person with a hearing loss. No longer am I just blind. I think I am still Marsha. I have heard some people say that, because I use alternative techniques, I am not doing it the “NFB way.” If I ever get lost in a very large convention room because I can no longer localize sounds for orientation and have to ask for help, people tell me that I just need more O&M training. Because I use a street crossing card to safely get across a street because I cannot tell where the traffic noises are coming from, people say that I am not independent. Because I prefer to use an SSP while at the national convention to enhance and equalize my convention experience, people look down at me and say I am being led around by the nose by a sighted, hearing person. When I now ask at meetings that only one person speak at a time and that they say their name first, people disregard the seriousness of my request and talk over each other, making it impossible for me to understand any of the speech. When I use a relay service to place a call, some blind people have hung up on me, justifying it by saying that it is too slow, unfamiliar, or they think it’s a spam call. At most of the meetings, people are not familiar with my technology, captioning, or CART for meetings and interactions. Sometimes when I say I do not understand what is going on in a meeting and ask that someone repeat themselves, I’m assured that someone will explain it to me after the meeting. Too frequently when I am using a microphone that directly puts the speech into my hearing aids to be passed around, some forget to pass it, don’t want to touch it, or don’t believe that I have a hearing loss. This happens because I sound so “normal;” I don’t sound deaf or like I have a hearing loss, and I must be faking. I think you understand what I am getting at. 

I try not to take it personally, you know, but for so long I haven’t felt accepted or normal within the blind community I was born into. I keep pondering the question: How did I go from a very involved blind child who learned all the skills, was born into the right family to get the message, a family who lived the philosophy, to someone who is now considered to have two heads in the blind community? I am saddened that now I look at the blind community and realize that there were almost no deafblind people truly INTEGRATED with the blind community and that most blind people who also have a hearing loss can’t or won’t even admit it.

The first step in recognizing that there must be progress in the blind community is acknowledging that deafblind people are a part of the blind community. It is just that their ears are damaged, unable to hear at all or with some limited degree of hearing. Most of our population is aging faster than we realize, and the largest growing population are those who are over the age of sixty-five years old and who have either a hearing loss or a vision loss or both. Not all deafblind persons call themselves deafblind, which is fine. It’s okay if you want to identify as blind hard-of-hearing, or hard-of-hearing visually impaired. However you decide to describe yourself is your decision and yours alone.

The difficulty comes when people don’t seek out ideas, information, suggestions, or experiences of those who are deafblind because it’s too expensive to use interpreters, or support service providers go against our philosophy, or it’s too much trouble to use relay, or that you truly do not know what to do or say to a deafblind person. Any way you look at it—if we’re born blind, acquire hearing loss later in life, or in my case while in my thirties, we are still a part of the blind community. When you look at me, I want you to understand that I am the same person I once was before but am now deafblind. I think it’s time that the blind community learned about accountability—toward its very members—all races, all genders, all ethnic backgrounds, all cultures, the general disability community, the deaf, etc. and truly learned how to INTEGRATE that into our community.

It’s also the responsibility of deafblind people to meet the blind community half-way; to educate them on communication accommodations, alternative techniques, supports, best practices, methods for integration, experiences, knowledge, and information. Just like the blind community has worked so hard since 1940 to be included in the conversation, the deafblind are asking the same of the blind community. The next time a committee is formed, many questions should be asked; but the one I am pushing is “Would this directly affect persons who are deafblind?” Seek out information and ideas about how deafblind persons can add to that conversation. The next time an outreach is planned, would deafblind people be able to help and participate? Seek out a person who is deafblind who might want to help reach out to the community and work out a plan so that all members can work together.

Did you realize that the National Federation of the Blind has a thriving division just for persons who are deafblind? In fact, I am the first vice president of the division and would love for state affiliates, chapters, other divisions, groups, or individuals to come stand alongside us in solidarity and learn something about us. Although right now we are a small division, we are comprised of many individuals from many backgrounds, parts of the country, experiences, communication styles, and identities. We would love to sit down and break bread with you. 

I love being blind, and I equally love being deaf. The two parts make me who I am, who I was meant to be: a person who happens to be deafblind.