Malisa Janes, Ph.D., is the former owner of The AccommoDAtor, a consulting firm in Houston, Texas. An advocate for human rights as mandated by the Americans with Disabilities Act (ADA), Dr. Janes has fought hard in Houston to make cultural, entertainment and sporting venues accessible to all people with disabilities. She focuses heavily on deaf and hard of hearing (D/HH) issues since she has hearing loss. Now retired, Janes continues to work on ensuring equal access for all people with disabilities.
In Houston, prior to 1995, a person with hearing loss was unable to attend many activities that were offered to the public. Now Houstonians can attend plays, the opera, museums, IMAX theater, the circus, the rodeo, the ice show and even America’s favorite pastime – baseball games – experiencing them all with the accommodations they need, thanks in big part to Janes!
Janes is a graduate of the Rehabilitation Institute at Southern Illinois University and Texas Accessibility Academy, a past member of the Texas Rehabilitation Advisory Commission, and the Houston Commission on Disability and the founder of the Houston Theater District Access-Ability Guild. In presentations, Janes shares both frustrating and humorous experiences based on her sudden loss of hearing in 1994.
Jan: Please tell me a little about your hearing loss.
Dr. Janes: I first found out I had hearing loss when I was 45 years old and in the doctoral program at Southern Illinois. A fellow grad student asked if she could give me some tests. Only after testing and seeing that I missed many of the words that are traditionally mispronounced and looking back at my behaviors as a child, did I realize that I probably had some hearing loss all my life. I had mild to moderate loss then but was fully functioning, so I didn’t rush out to get hearing aids. I graduated and went to work and within two years decided it was time to get hearing aids.
Several pairs of aids later, I realized with my latest ones that I was not passing as a hearing person anymore. Everyone needed to be told that I had a hearing loss as my behaviors were not “normal.” I was missing cues that prompt interaction. My staff thought, for example, that I was getting stuck up, avoiding them when they said “good morning.” My secretary was having to field more phone calls when I had days that my hearing was not up to par. I did not know at that time that there were any options that would have made my life easier. Nor did I know anyone else or any organizations that could have provided some information.
Jan: Wow, this sounds familiar – like the experience of so many of us with late onset hearing loss. Then what happened?
Dr. Janes: I was struggling along and under great stress at work when I got pneumonia. I was given drugs in massive doses. Within 30 days, my remaining hearing was gone. I immediately had three top physicians confirm that I would not get any hearing back. All agreed that the likelihood of getting any hearing back was nil. Meanwhile, my board of directors put me on medical leave. I knew the end of the job was in sight. I was in a small town and there was only one resource there — a signing deaf woman who worked part-time giving out free TTYs. I went there to get a TTY and she was a savior of my sanity! She knew nothing about how to help a hard of hearing person or a late deafened person but she knew I needed to get my confidence back. She took me to a picnic of signing deaf people and I saw they had fun, laughed and had lives. So I figured I could too.
I signed up for American Sign Language classes but once a week wasn’t that helpful and I knew no one who signed. I began to work on speech reading. I had an audiologist test me and I found out I could speech-read about 75 percent of what she said. With the upgraded hearing aids, I was doing about 90 percent, not bad for a “deafie,” I thought!
I tried captioning and was frustrated — I couldn’t enjoy it! My emotions wouldn’t turn on with the stress of having to read rapidly. I cried to my deaf friend.
She said, “You didn’t learn to ride a bicycle overnight, did you?”
And I began to think on that. I went and got Disney movies where dialogue was slower paced and had fewer words. With practice this made the experience pleasant and I found I was enjoying myself. The same was true of learning to use the TTY. I began to think about how to make that system work for me. In the meantime, I was still pretty much hiding out.
About six months later, when I knew returning to my job wasn’t going to be possible, I hit the wall. Life had to have some meaning, the people I dealt with everyday could not look at me with pity. I had to get out in the world and find a place where I, as a deaf person, could live and work.
Jan: So what did you do next?
Dr. Janes: It was during this time I found out about SHHH (now Hearing Loss Association of America) and ALDA (Association of Late Deafened Adults). I found their TTY numbers and talked to folks in Chicago and D.C. I tried equipment and found that none worked for me. Then I saw live captioning for the first time and was thrilled, knowing that there was an option. I even flew to Gallaudet and stayed with a professor who showed me how to use the computer to my advantage and gave me the confidence to be more assertive (if not down-right aggressive) in getting folks to face me and stand in the light or write to me when I couldn’t understand any other way.
Then I sold the house and hit the road – looking for a place I wanted to be, a place where I could find something that I could do. I was determined not to sit around and do nothing. I had been trained to work with people with disabilities. I knew that I could get Vocational Rehabilitation to help me when I decided what I wanted to do and where I wanted to be.
I visited many towns and many people. I applied for 300 jobs and got two interviews and no offer. I was a “no fit” for the hearing world and a “no fit” for the Deaf world, as I did not sign or fit into the culture.
Jan: Was there a particular incident or moment that made you decide to do advocacy?
Dr. Janes: I found some people at a SHHH meeting in Houston who were a lot like me. They told me that no doors were open. Many had tried but they hadn’t succeeded. I also talked with a lot of the signing deaf and the interpreters in Houston, and they too couldn’t get much access to public venues. That is when I heard my calling! I knew how to fight for the rights of folks with disabilities. I’d helped get ramps and accessible bathrooms in place! I was not afraid of being known as a deaf person (with a little d) and I knew what we all needed. I went to Vocational Rehabilitation and had them get me everything I needed to begin to do advocacy.
Jan: What was the first venue that you tackled and how did it turn out?
Dr. Janes: With the entire city needing to open doors, where to start? I pondered for a bit and began to talk to those I had met in SHHH and a plan began to form. Since I loved theater, as did several of the SHHH folks, that seemed like a good place to start.
But to tackle access from only the hearing loss angle didn’t seem like a smart move. I had met many folks with other disabilities and they were not happy with the theater access either. I also realized that the person who would first knock on the door would have to probably threaten legal action and would not be liked by the systems that didn’t want to change. I made sure there were a couple of folks who could be “good cop” to my “bad cop.” I’d do the threatening and foot stomping and they would follow after me saying they would help the facilities so I didn’t file suit! I also found a captioner and some interpreters who were willing to work with us to open the doors. Much of their early work was done at no charge, to get the facilities to see that the public would not rise up in arms if access were given.
Jan: What was the reaction of the different venues when you began?
Dr. Janes: I found that the facilities and the city did want to avoid trouble and were quite willing to support the founding of a Houston Theater Access-Ability Guild. So I began recruiting 50 top people from all disability groups to form the guild. These folks helped site review all the theaters and facilities where entertainment is offered. Changes began to happen when two-person teams manned a disability booth at some events to assist the patrons. The payoff for us was that we got access to unsold seats free of charge.
Once the initial access began, other things presented themselves that made it difficult to access the theater. Phone systems, ticketing, bus schedules, the lack of a season schedule that let us buy season tickets for accessible events — all got addressed over a four-year period.
Communication was opened and continues with many of the main facilities. As one facility would come around we’d move on to another. Some newly aware folks in Houston began to work independently on the things that interested them. The sports authority, museums, the circus, the ice show and the rodeo all received written requests for access. It didn’t take too long before they all knew what the ADA said about access! And they learned from their lawyers that they needed to provide it!
During this same period, the TV stations were given written requests, as was the city council. Many local shows that receive federal money were rapidly captioned. The city not only has captioning at all their meetings but plays the captioned reruns on the city channel. Before long, there were many of us in Houston calling and asking for access and not taking “no” for an answer.
Jan: Do you think most of Houston is now accessible to those with a hearing loss?
Dr. Janes: Houston is not totally accessible but if anyone wants something to be accessible the doors are open for the request to be filled. My dream is that all of Houston be accessible to everyone at all times without having to ask! We’re far from that goal but it is now possible to work towards that. I think building awareness that access is a right is the next problem that needs to be addressed. Not everyone who has a hearing loss or uses a wheelchair understands what they have to do to keep the door oiled and opened.
Jan: Any advice for others who would like to approach a particular place to get access?
Dr. Janes: Be prepared to attend functions and let the planners know you are disabled and need the access. If no one asks, nothing will be done. If people don’t buy season tickets the doors can swing shut again and they will be harder to open the second time! Form guilds that go in every six months or so and check to see that new staff is aware and trained and that equipment is maintained. Once access is given, it is important that thank-you cards and recognition be given to those who made it possible.
I have done some training for the Texas Association of Museums. I think there are many low-cost ways to make museums more accessible not only for people with hearing loss, but for all people with disabilities. I’d like to see every museum accessible so that people with disabilities have the same educational and activities advantage as others.
Jan: Tell me more about getting the accessible baseball stadium.
Dr. Janes: I do have to brag on the others who have worked to get the sports accessible (I’m not a sports fan). The baseball stadium has captioning at all the games – a first in the nation. I’m delighted to report that the new football stadium and the new basketball stadium offer captioning as well, and there was no big battle to have that happen.
Jan: How about some suggestions for a town that wants to have more access.
Dr. Janes: My suggestion for any town that wants to start to have more access is to form a group and begin to lay your plans. Educate yourself in the law and know your rights and don’t take no for an answer. Start with one thing and it will help you get the next thing. Just make sure your group is willing to be seen, not just during the push, but after access is given.
There are at least a dozen people here in Houston now who read the paper every day and note things that need to be accessible. Then we send e-mails letting those events or facilities know that we need access, exactly what we need and why and who they can contact to obtain services that will give us what we need.
For example, when I knew the Rodeo had assistive listening devices (we had checked them out to make sure they were operational and that they had a sufficient number), we wanted to also make sure that other folks with hearing loss could attend. I sent them a written request for two tickets to every performance – one seat for me, someone who is deaf and cannot sign or use electronic access, and one seat for my date who is a signing deaf person who can only benefit from interpreters. I included the names, e-mails and phone numbers for the professionals who could provide them with information and quality services.
When I got notification that they were going to provide services, we got our e-mail lists running, telling everyone to get tickets! The same was true for the circus. One year, because no one asked for circus access, they were not going to provide it. We had to remind them that they needed to advertise access and the dates they were offering it if they wanted to sell tickets.
That is an ongoing battle, getting the advertising changed so that folks do know who to call and how to request access.
Jan: Now you have a cochlear implant (CI)! Tell us about that.
Dr. Janes: I finally got a CI in 2002 and proceeded to spread my wings. Due to my work with advocacy, I was invited to visit South Africa and do workshop presentations there to help people with hearing loss learn how to get more access for themselves. I went for a month in 2003 and was keynote speaker at their National Audiology conference. Then I went again for two months in 2006 and traveled the entire country making presentations in new areas. Without the help of two concerned and hospitable people, Patsi Schuhmann and Dr. Wia Kotze, this would have never taken place, and without my CI, this would not have been possible.
Jan: Are you still doing this kind of consulting work?
Dr. Janes: Jan, I’d love to be invited to teach groups of folks how to break the barriers! I work cheap — pay my gas, feed me and give me home hospitality.
Jan: Sounds terrific to me! Thank you, Dr. Janes!
