Though I was relatively new to SWC, I had read the glowing accounts of people who attended the 2002 convention in Alexandria, VA., and how they bonded and laughed each day and well into the night. I knew the 2003 convention would be held in Seattle, just two hours away from me, and I had to be there to see what it was all about.,
Since I couldn’t get time off work to attend the full 2003 convention, I made the best of the two days I had. On Friday morning, I got up early and drove to Seattle in time to attend the second day of workshops. I didn’t know many people there, but that changed fast. During the morning break, people welcomed me, introduced themselves and chatted as if we’d been longtime friends. One group invited me to go for lunch with them. Another invited me to join them on an afternoon boat ride. I felt so overwhelmed by these generous offers that I turned them all down and spent a quiet lunch alone, in my usual comfort zone. I’ve regretted that decision ever since and vowed never to repeat it.
“People I had met online and others I had never met became instant and lasting friends at that convention.”
For the next two days, I spent as much time as possible in the company of other SWCers at workshops, social activities, the banquet and in the hotel bar, which has become a traditional gathering place for SWCers at the end of each day. People I had met online and others I had never met became instant and lasting friends at that convention.
Hearing loss is a powerful bond. Many of us don’t have family, friends and coworkers who understand the struggles we face each day. At SWC conventions, we have a lot in common, even though our hearing losses vary. We learn together, share our experiences and use whatever methods we can to communicate with each other, without fear of being left out.
“I’ve always liked to say, ‘Hearing loss brings us together; friendship keeps us together.'”
The motto of the SayWhatClub says it all: “Friends with Hearing Loss.” As I’ve always liked to say, hearing loss brings us together; friendship keeps us together. The strength of the SayWhatClub is what we learn from each other and the support we receive from our friends with hearing loss.
Since my first experience in 2003, I haven’t missed a SayWhatClub convention. It’s one of the highlights of my year. I look forward to bonding with old friends and making new ones at the 2018 SWC convention from Aug. 1-4 in St. Paul, MN.
I hope to see you all in St. Paul.
For more information on upcoming conventions, visit
Chelle:This article will not only help those who lipread, but it will help all hard of hearing people and the hearing people who communicate with them. You cannot talk to hard of hearing people the same way you do a hearing person. I realize you talk to more hearing people than you do hard of hearing people so it’s a habit of sorts, however, a few minor adjustments will help the hard of hearing a great deal.
Michele:Yes, we can all use pointers for better communication. Hearing people have various reactions when encountering someone who is different. Some are uncomfortable because they’re not sure how to accommodate someone with hearing loss to make themselves understood, while others seem to be more intuitive and mindful about what is needed and they accommodate automatically without anyone having to ask or inform.
Chelle:Even hard of hearing people are used to living in the hearing world and talking to hearing people. I’ve witnessed them forgetting the good rules of communication when talking to me. I volunteer for several hearing loss causes, go to hearing loss conventions, plus I work part time at the state Deaf and Hard of Hearing Center, so I’ve hung around with hard of hearing people over the last four or so years. My home life is, however, in the hearing world so when I started working and volunteering, it was hard for me to remember to switch to the different modes of communication. It became easier and after about six months I can now switch between modes easier and talking to people who are hard of hearing is habit now. If I can do this, you can too.
Michele:Attending my first SayWhatClub convention in Baltimore, Maryland in 2011 was an eye-opener. I found that I was terrible at giving the accommodation that I need myself. When you don’t know others in your real life with hearing loss, and you mostly communicate with hearing people, you are habituated to expect that everyone else can hear, just as a hearing person is. So, it does take some time and training to get into a new habit of communicating in a way that someone with a barrier needs, and we hope our tips help you do that. Chelle:Most hard of hearing people use some lipreading whether they know it or not. Lipreaders and hard of hearing people get stuck on a word, if not a string of words. That is the main frustration between hearies and the hard of hearing. We are trying our best to hear but our ears are broken. Maybe the hard of hearing person knows what to ask for, but many do not know or are afraid to be troublesome and ask straight out. If you are in doubt, ask the hard of hearing person, “What helps you understand me better?” In the meantime, here are some suggestions from Michele and me which also includes a few hints for hard of hearing people.
Michele:Chelle’s right, everyone lipreads to a certain degree, they are just not aware of it… the same way in which people with hearing loss are not aware of how much our hearing informs us in our everyday lives, until we talk to others in our shoes. Who would have thought being hard of hearing would complicate the use of elevators, indoor plumbing (we often leave water running), and driving a stick shift? Right again, Chelle, when in doubt, ASK! It’s not offensive for a hearing person to ask someone who is different how best to communicate with them, and it’s also not offensive for lipreaders to define what they need for understanding. Chelle:First and foremost, before speaking, get the person’s attention even if you are in the same room. Call their name, give a little wave and pause until their eyes are on you then start talking. Be within 4 to 6 feet when talking, as distance makes lipreading more difficult. If I’m too far away…My husband calls out ‘whoop’ in a tone he knows I can hear (such as when we are skiing) to get my attention.
Michele:Getting the person’s attention first is so important! If you don’t, then the lipreader is already behind and confused… they’re trying to figure out what the subject is, whether you’re telling them something, asking a question, or just interacting. Give the person with hearing loss as much info as you can right off the bat. Instead of starting in with a thought, say something like, “Hey, I want to talk to you about _______.” and then expand on the subject. If it’s a question, say “Can I ask you something?” Premise your conversation start as much as possible.
Don’t be rude while getting someone’s attention. Years ago, a dad on one of my kid’s soccer teams was very self-conscious at getting my attention, so he’d kick my foot when he wanted to talk to me. I was nice the first time I let him know there were better ways to get my attention, but eventually I had to tell him if he kicked me one more time I was going to deck him. If you’re unsure about how to get someone’s attention, ask them what they prefer. I guarantee no one will ever say “Oh, just kick me.” Chelle:Slow downa little but not too much, going slow motion distorts lipreading. On the flip side, talking too fast is hard to keep up with. There’s a happy medium in there somewhere. Take more time to enunciate. Some people don’t move their mouth much when talking, making lip-shapes harder to read. Ask your hard of hearing friend if this might be a problem. At a lipreading class, we all had a hard time understanding one particular lady. I caught her on the side once and confessed it was hard for us because she didn’t move her lips much. After that she worked on moving her mouth more to form the words and we could understand her better. *HOH people, it’s awkward to ask people to move their mouth more but it can help.
Michele:Even hearing people know what it’s like to not understand fast talkers, mumblers, and those who do not enunciate well or who have a thick accent. Give what you would like others to give you in conversation—a slower but normal pace, no overly exaggerated lip movements, and clear enunciation while speaking from your diaphragm. Example: My oldest son can be a mumbler and I have a heck of time lipreading him, but when he’s reading literature out loud to his girlfriend I can understand him perfectly because he’s projecting and focusing on enunciation more. So, I asked him, “Can you please talk to me as if you’re reading literature aloud, I can understand you so much better in that voice?”
It’s also okay to tell someone when they are not a good lipreading subject. You’re telling them because you want understanding, not because you’re trying to criticize. However, people can be offended if you come across as blaming them. Practice at putting people at ease while asking them to adjust their speaking for success. Example:“Your accent is lovely, but it makes my ability to lipread a little harder… if you could go a bit slower that would help.”; or “I love that you’re such a passionate and animated speaker, but when you turn your head while talking or motion with your hands in front of your face I have a hard time following you. Looking me in the eye while you are speaking is helpful.” If someone has told you that you are hard to lipread, don’t take it personally and go watch yourself speak in the mirror in your normal delivery; then concentrate on improving your lip movements for better understanding. Can you see the difference?
Chelle:Nice addition Michele, thank you.
My next item is to rephrase rather than repeat. There’s nothing worse to a hard of hearing person than someone who repeats it all in exactly the same way all three times. There’s the same rise and fall of tones with certain words exaggerated in exactly the same way. Instead say it a little differently; either shorten what you said, find a different word or lengthen the description to give more clues. Take the stress/exaggeration off words and say them in a normal tone of voice. *HOH people, we need to learn to ask for a rephrase instead of a repeat. *Also, tell people the parts you heard so they will only say what you missed, it might help.
Michele:Yep, repeats often don’t work. Say it in a different way and add more where appropriate. However, remember, we are all different and some feel that less is better and like to stick to basics, so it is best to ask each person what they find helpful.
Don’t Use Contractions or one word sentences
I tell my family “No one-word answers and don’t use contractions!” If the answer is “yes” or “no” then use it in a sentence—”No, I am not.” vs. “Yes, I am.” changes up the syllables… people don’t realize how we lipreaders really are grabbing onto every little detail of what we do hear to help us figure out conversation. We are sudoku masters of conversation—filling in what’s known and eliminating possibilities through reason, except lipreading is harder and we have to do it fast enough to keep up with each new thing that is said.
And, don’t restrict use of these tips to the person with hearing loss, practice them with everyone you are talking to in a group, as the person with hearing loss is trying to follow and lipread everyone so they can interject and participate in the group conversation. Plus, applying these tips to all of your conversations will help you become a much better communicator with everyone. I even do this with my granddaughter when we play “Go Fish”… if I don’t have the card she asks for I say, “No, I do not have a ______, go fish.” She started out just saying a simple “yes” or “no” to my asking for a card, but now she speaks in full sentences like I do, but sometimes I have to remind her.
Adding more words is what I prefer. My husband might have mentioned he was going to town earlier in the day (maybe I heard him, maybe I didn’t?), and then later he will say something out of the blue like “Are you going with me?”, and I’ll have to figure out where “with me” is… it would be much better if he said “I’m getting ready to leave for town, are you going to go with me?” Talk in whole thoughts and use more describing words to make sentences clearer and to give them more meaning.
Noun before pronoun please
The other big thing I come up against is someone using a pronoun right off the bat. Generally, a pronoun should follow the word it refers to, so you shouldn’t use a pronoun until you’ve used the noun first unless you intend to leave your listener in suspense. Yes, I’m a grammar whore, but also it makes lipreading and understanding harder when you start off referring to someone or something without naming them/it first… not only do we have to follow what is said, we also have to figure out who I, me, mine, you, yours, his, her, hers, we, they, or them might be. Or, what that, this, those, or these is referring to. It becomes too much. Repeating a whole phrase when you’re not getting one word is really irritating, and that’s why a person with hearing loss needs to tell people what they need if they don’t get it on the first repeat—“Say that in a different way, please, and be more descriptive.”
The ASL Alphabet can help. Just signing the first letter of a word can clarify the difference between two words that rhyme.
Chelle:Learn the American Sign Language (ASL)alphabet at the very least. Many hard of hearing people are familiar with it and if not, you can both learn. Go to www.lifeprint.com to learn the ASL alphabet. Then if that one word stumps the hard of hearing person you can start spelling it with your fingers. Most of the time you won’t have to spell the whole word, just the first two or three letters. It’s extremely helpful and can be used anywhere, any time. This works great for spelling out names too. People who are hard of hearing have the toughest time getting names right (Was it Terri or Cheri?). It helps them to remember the names too. But go slow! We are not fast fingerspelling readers generally.
Michele: I’ve known how to fingerspell since early childhood, as my deaf grandmother taught my sister and me. It was the only sign language she knew. We used it often to aid communication when Grandma would get stuck by what we were saying. My kids (daughters, not so much sons) are good to use fingerspelling with me when I get stuck on a word, especially when introducing someone. I’ve been wanting to at least learn PSE (Pidgin Signed English is a combination of American Sign Language (ASL) and English), sometimes called CASE (Conceptually Accurate Signed English), as I notice how much it helps when I’m talking with someone who uses it.
Chelle: I also suggest learning the ASL numbers too because hearing numbers can be hard and numbers can be so important; was that 15 or 50? It comes in handy for addresses and phone numbers too.
Gestures can aid communication and sink words in faster than repeating. It might feel awkward at first but after a while it becomes second nature and can be quite entertaining. Use facial expressions as needed too. ASL and the Deaf community use a lot of expression while communicating and I think the the Hard of Hearing community could benefit from that as well.
Michele: I love gestures, and because I began losing my hearing in childhood I’ve always been the recipient of some sort of gesturing. In my immediate family we even have family sign language for things/words we use a lot. Think of playing charades and what you can do to help your team make the right guess for the win!! It works the same with gesturing for someone with hearing loss.
Chelle: Here are some other things that make lipreading harder; smiling too much. When I get around other hard of hearing people I tend to smile a lot because I’m so happy to be within in my tribe. I think this might have made it hard for Michele to lipread me at first. While I teach lipreading classes we get to laughing and smiling (I try to make it fun) then I end up covering my cheeks with my palms and wiping the smile off my face before continuing. Michele: <laughing> I had forgotten that I used to have such a hard time lipreading Chelle, and I think she might be right, smiling lips impede lipreading ability. I’m probably the opposite… over many years, I’ve concentrated so hard to enunciate and project my voice, in order to keep my speech clear, that I tend to come across pretty serious at times, especially if I’m meeting someone for the first time, though I’m sure I do my share of smiling while talking.
My best grade school friend told me once, “You were so serious and studious at school, but outside of school you were funny, cheerful and full of laughter,” and I think that’s why, I had to try so hard in school to keep up and stay on top of what the teacher was saying that I looked serious much of the time.
Don’t talk with your mouth full of food or while chewing on a pen
Chelle: Fingers, hands or items such as a pen or pencil in front of the mouth make it really hard to lipread. Chewing gum, or eating in general, is distracting. It’s hypnotizing, in a warped way, watching the wad of pink go around so focus on the lips is lost. When the person is eating, it’s the same except we are waiting to see if food comes flying out at us too. *Don’t be afraid to ask people to spit out their gum or candy, or lower their hands from their mouth.
Michele:Anything covering or distorting a person’s mouth will be a distraction. I’ll add: Braces, facial oddities, bad teeth, etc. These things are hard to mention without offending, but I have done it successfully, though I’d probably never tell someone their bad teeth are tripping me up. Just yesterday I explained to a young girl at a concession stand, “Braces really wreck my lipreading skills, so I’m struggling here, but that’s not on you, it’s on me. Lipreading doesn’t work 100% of the time,” always said with a smile. Chelle: Seeing is hearing, the eyes are the ears. Make sure there is good lighting to make lipreading easier. It may create ‘atmosphere’ to dim the lights but it will also bring communication to a halt or isolate the hard of hearing person. *As a hard of hearing person, do not be afraid to ask people to turn up the lights or switch places so their face isn’t in the shadows. Start it with humor, “I can’t hear in the dark, can you…” Everyone has laughed and turned the lights back up for me. *Both the hearing and Hard of Hearing can ask for lights to be turned back up at bars or restaurants when this happens too. Usually the business will accommodate the request.
Michele:Seeing is hearing for anyone with hearing loss. I explain this to my 5 year-old granddaughter, “If Mim can’t see you, she can’t hear you,” and she understands. I think I get better accommodation from her than some of my adult family members. I’m always torn about lighting in some situations, as I don’t want to take away from others if the low-lighting is intended to create a mood, but I do often point out that I can’t hear if I can’t see clearly. You really have to gauge each situation and decide those instances where you want to ask for the lights to be left on. However, if you’re lucky, some wonderful friends and family do step in for you, and that lessens what can seem like a burden of always asking to be accommodated—I admit, sometimes I feel like a killjoy. Example: My husband and I did a houseboat trip with several other couples from high school. Late nights on the water were nice, with the lights down low, over dinner, but if the lights were turned off I wasn’t part of the conversation. I didn’t feel I could assert my need for light the first night. Turns out I didn’t have to, a good friend stepped in when someone turned down the lights, saying “Michele needs the lights on to hear.” I was so grateful for an intuitive friend.
However the person who turned the lights down at dinner was up on the deck of the boat with me later that same evening, star-gazing and chatting away, just the two of us. After about five minutes of non-stop talk, he paused, and I said in a joking tone, “Mike, you’ve gotta know that I have no idea what you’ve been saying. I really am deaf.”
The above is a perfect example of how some friends get it and you never have to mention your hearing loss to them again, while others can’t remember that you can’t hear from one moment to the next.
The one area I’m not shy about is backlighting, which is a lipreader’s nemesis. I always ask to switch places so the people I’m with are not backlit. I’ll even tell wait staff they are backlit and ask them to move to better light so I can lipread them better, and I’ve never had anyone refuse or react negatively.
Which brings up another point: The necessity of people with hearing loss constantly having to remind others about what they need. If someone you know has a hearing loss and lipreads, and they’ve taken the time to explain how best to communicate with them, it’s likely that those things will also aid you in all of your conversations and exchanges, so try to remember and practice them. If you see the lipreader only occasionally, they will be more understanding when you don’t remember their instruction, vs. someone they see every day. And another thing: The person you know with hearing loss is likely the only person you communicate with who is different. For the person with hearing loss, you are one of many that they need to ask for accommodation from every single day, and it does get tedious to have to constantly remind the same people over and over about what they can do to facilitate better communication with us.
We get weary.
Chelle: An example that encompasses a little of all of these strategies happened just the other night on our patio with my husband and another couple. I got stuck on a word while the conversation was aimed at me with laughter (not about my hearing). Instead of bluffing, I fessed up, “I’m missing the one word.” Nothing was making sense because of the one missing word. I looked to my husband who made a “G” for me with his fingers. He didn’t spell out anymore, maybe because we were with others or he was stuck spelling at the moment, so I was still stuck. Our friend said it a couple of more times it was still not visible/audible for me. He grabbed his shirt (gesture) and still made no sense; his shirt was blue, not green. I looked back at my husband who added another word and I got it! “Under garmet,” and I got it. They were saying garment. There was no frustration between us, they saw how hard I was trying and the kept going until I got it. It took all of us to make it work, no one was left out or frustrated and we all got to laugh.
Michele:Good example, Chelle, that demonstrates how a lipreader’s mind works. I think it’s really useful to share these examples of good practices that work in real life. It’s the best way I know of to help others who want to be more successful lipreaders and communicators identify areas where they can improve.
People often ask me how I lipread so well, and I’m not sure how to explain something that I’m hardwired to do? How do you explain something you learned while not even being aware you were learning it? Collaborating on these lipreading articles forces me to think more about what makes lipreading successful and useful for me, which, in turn, helps both hearing and hard of hearing gain a better understanding of lipreading and its potential.
Chelle: We’re happy to bring more basic lipreading techniques to light and much of it is sound sense rather than only seeing shapes on lips (which we’ll get to later). Teaching speechreading in Utah has helped me focus more on what it takes to make it happen. I’ve probably been doing it the same way Michele has (only not as well she does) for a number of years. Focusing on all the elements that go into lipreading has bumped me up to the next level where I’m a little better and I realize that advocating for myself is a good portion of what it takes. Michele and I make a good team because we’ve both been lipreaders for decades, and we want to share what we know and learn with others too.
Richard Pimentel was the keynote speaker for the 2016 SayWhatClub Convention in Boise, ID. The convention crew was honored to have him speak and attendees were excited, especially after watching the movie Music Within depicting his life and his work toward the American’s with Disabilities Act (ADA). So much of what he said I didn’t want to paraphrase so where the text appears in blue, it’s directly quoted from his speech.
A short bio of Richard’s life can be found on thewebsite where he works:
“Richard Pimentel was pronounced dead at birth in the delivery room. In a miraculous turn of events, he lived. His mother, who had experienced three miscarriages before his birth, left him in an orphanage, unable to come to terms with his existence. After his father’s death, he was raised by his impoverished grandmother and deemed “retarded” by a school guidance counselor. He never spoke a word until age six.
After his mother abandoned him again for a new boyfriend, Richard was left homeless and roamed from friend’s homes to his father’s old workplace, a strip bar. He lived and slept in the dressing room. During these hard times, he managed to win two national high school speech championships and was offered a college scholarship by College Bowl founder, Dr. Ben Padrow. Richard arrived on campus only to hear Dr. Padrow tell him to come back when he had “something to say.”
Richard followed Dr. Padrow’s advice and quit school. Soon after he was drafted to Vietnam, where he survived a volunteer suicide mission and became an acknowledged war hero. During his brief celebration, a stray bomb exploded in his bunker and ravaged his hearing. Not only did Richard lose his hearing, he developed tinnitus, a constant ringing in the ears. The government dismissed his dreams of college and public speaking, insisting his fate was one of insanity and rage due to his condition.”
Richard started his speech with humor, talking about his past and growing up in Portland, Oregon…. Being poor enough to be on the “relief” program (before food stamps) and getting the worst peanut butter ever which came in a can and had to be shaken with a paint shaker to be mixed. There was no money for a college education so he took up a government program called Vietnam, were a college education could be obtained after government service. Several times we laughed as he talked about his service years leading up to a tense moment when his small unit was surrounded by the enemy on a suicide mission. Decisions had to made and they made it back to camp where they were holding funeral services for the 5 men who were expected to die.
The men were awarded a night in the beer bunker for their survival. Ten hours later a rocket was exploded on top of the beer bunker while they were still in there and the bunker imploded. “What did the implosion do? Well, the worst part of the bunker, where all the air came together, air at high velocity in a confined space, it literally blew the eyes out of the person who was there. All the rest of us got traumatic brain injuries. Even death.” It caused him to lose 70% of his hearing, losing the high frequencies, a classic ski slope loss.
After the explosion, he had to learn to walk, talk and even feed himself again-which he said he mastered almost immediately. Once he was getting around again, he wanted to go to college and the government refused.
Richard’s Comments are in blue.
You know what the rehab person told me? He said: Well, I can’t spend government money on sending you to college.
I said, why not?
He said, because you are deaf!
I said, what? Those counselors have no sense of humor. I said, I’m not deaf, you moron. You are talking to me.
He said, no, no, you are not totally deaf. If you were totally deaf, you’d be fine. I’d just send you to Gallaudet and make a good deaf person out of you. But you lost over half your hearing. You don’t have any hearing in the upper register. You got good hearing in the lower register. So you know what you can’t hear?
I said, what can’t I hear?
Well, you can’t hear the beginning and ends of all consonants. They are all going to sound the same to you. Your T’s and your Z’s and your V’s, they will all sound the same. He said, you know what you hear?
I said, what?
Your vowels. You hear your vowels: A, E, I, O, ooh. But not your Y’s, not even sometimes.
I said, what do I do? Do I learn Sign Language?
He said, you don’t want to learn Sign Language. The only people who do Sign Language are the deaf, and they don’t want to talk to you!
I said, well, what do I do?
Well, if you don’t hear consonants but you hear vowels, you only have two choices in your life either learn to read lips or you move to Hawaii!”
The counselor went to explain how tinnitus would keep him from learning as well and possibly drive him crazy. His hearing loss and tinnitus would make him angry, violent and foul mouthed.
Moving on, the counselor asked him what he wanted to do in life and Richard said he wanted to be a public speaker. The counselor told him it wasn’t possible and pulled out a big book of disabilities. The book listed careers people could do with their disability, under deaf was listed “shoemaker”. The counselor moved on to traumatic brain injury and pointed the list of options out to Richard and asked do you see “professional speaker” listed? No? Then you can’t do it.
Richard decided to prove him wrong. He learned to read lips and went to college anyway. There he met Art Honeyman who had severe cerebral palsy. Most people couldn’t understand Art but Richard understood him perfectly. It turned out Arts speech lined up with Richard’s audiogram perfectly. Art had high IQ and Richard often translated for him. Then Richard wouldn’t be able to understand the person talking to them so Art would translate for him (Art could hear). “We were the strangest pair you ever saw in your life!”
Art was in wheelchair and the majority of public places were inaccessible in 1970. As an example, the college dorms and bathrooms were only accessible if Richard or someone else carried Art over their shoulder. They became good friends. On his birthday in 1972, Art called him at 3 am to go out and celebrate with pancakes. He needed Richard to help him dress and carry him and his wheelchair down 3 flights of stairs, then push him 8 blocks to the restaurant where he had to pull him more steps to get inside. Richard figured why not and did it.
The waitress had come up and never seen anyone like Art before. She said the cruelest thing I ever heard in my life, cruelest thing I have ever heard in my life. She went to Art and she said, you are the ugliest thing I have ever seen in my life. Do you expect me to bring you food? And I don’t know how you are going to eat it, like some pig in a trough. You are going to make us all sick. So I won’t serve you. Get out. She said, I thought people like you are supposed to die at birth.
I looked at my friend, Art. He’s my best friend. What’s he going to do? How’s he going to react? Is this going to ruin his life? Remember, he’s a genius. But he’s better than a genius he’s an evil genius! And Art turned to me, and I will tell you exactly what he said. He looked at me and said, Richard, why is she talking to you that way?! You don’t look any worse than you normally look!
Lord knows, I wanted to say it to him before, but he was my friend. I said, she’s not talking to me, she’s talking to you!
He said, there’s only two of us; how can you be sure?
I said, I think she’s trying to take me home and trying to get rid of you.
So we got into this big argument about who she wanted to date, and that made her really mad. You can either leave, she said, or I can call the police.
And I said, call ’em.
And they came. And the police said, you can either leave or you can go to jail. And Art said the words that changed my life: He said, I want to go to jail. Then he said, and Richard wants to go to jail too.
I said, no! I don’t want to go to jail. I want to get a job with a big American company. I could have left. Art wouldn’t have blamed me. I could have just got up and said, I am not going to go, and they would have taken Art to jail. But a few things occurred to me.
First intellectual reason was, if they didn’t want me to commit civil disobedience, why then did they require me to read Thoreau?
The second intellectual reason: I didn’t go to Vietnam to protect people I don’t know to come back to find the people I care about have no rights.
The third one wasn’t intellectual, okay? How the hell are they going to fingerprint Art? This I got to see. This will be worth going to jail for.
They were jailed and appeared before the judge who found them guilty under the “Ugly Law.” Portland Oregon had an Ugly Law. Richard realized he was living in a time of disability apartheid, this seven years after the Civil Rights were enacted. Art and Richard continued going to places there weren’t welcomed and were arrested again and again.
Why? Because we believed since they were enforcing an absolutely unjust and unfair law, that if we made them do it over and over again, eventually they would have to change the law out of embarrassment. I started a mission in 1972 that ended 20 years later with the passage and eventual enforcement of the Americans with Disabilities Act. It was a tough road.
What I want to share with you is this. You know you are going to look at a lot of the ADA stuff, and you are going to see — oh, you will see Justin Dart and all of these people with wheelchairs, you are going to see people climbing up the steps of the Capitol. You are going to see such dramatic things, and you know what you might believe? You might believe by looking at that the only people who were involved in this were folks in wheelchairs, and the only issue they cared about was bathrooms, and stairs, and doors and ramps.
I want you to know, there were a lot of other people involved in the movement. People who were deaf and had been deaf for generations. And then they had people like me, the recently hard of hearing. I remember when I first started, trying to become a leader in the disability community, I was criticized for not being disabled enough. I was criticized for not being deaf enough. I was criticized for not doing Sign Language.
Richard went to share his experiences in helping people get accommodations, Deaf and otherwise. While standing up for a Deaf employee who’s supervisor wouldn’t allow her an interpreter (she read lips too well) during a disability presentation Richard was giving at a big company earned him the respect of Deaf culture.
When the disability community first started with ADA, it was a very physical disability community. Sensory was not a big deal, except for blind. They didn’t think that retardation should be included. They didn’t think that mental illness should be included, or that learning disabilities should be included. And it was the deaf community that said, we need inclusiveness.
I want you to know right up there with all the folks getting all the photography going up the steps, there were a number of folks who were Deaf and folks like me, only hearingimpaired who helped put the ADA together. You folks are very much a part of that.
The deaf community, along with all the other communities in the disability field, helped put the rights together. And we didn’t do this together so we would have lawsuits. You know what we did ADA for? The simplest thing in the world. We did it so that people with disabilities could have a spontaneous life. You don’t have to call ahead to know that you can get somewhere, or that someone will be able to talk to you, or that you will have another way to communicate available to you. We want what so many people without disabilities take for granted the ability to have a spontaneous life. This really is all it comes down to. And we ended up in 1990 passing that.
Look for more of Richard’s work in a program he’s working on for parents of children with disabilities. He wants them to know a disability does not define anyone and that they too can be successful in today‘s world. He will start in the Boise area, where he lives, and wants to take it nationwide.
Who you are is important. Every decision that we make about anyone should not be based on what they have but who they are. Disability is not a 4 letter word. Recognizing a disability is important so everyone knows how to advocate for themselves. Tell people in a kind, positive and creative way what you need.
His final words to us was for children with disabilities but I believe it applies to us all:
The shortest distance between where a young person with a disability is and where they want to be is a road that is illuminated by their own dreams, not by the dreams that we have for them, no matter how much we know, no matter how much we care, and no matter how much we love them. Let us enable them to find their own dreams, their own music, and their own definition of success. That’s the best advice that I could give anyone who cares about someone with a disability. We didn’t work all of these years and I’m old now to help ourselves. We worked to help this new generation of young people with disabilities to live a spontaneous life.
He received a standing ovation from our attendees.