Presenting NAA Bill of Rights: A Call to Action
Hello Boston! And welcome to this conference. What are we doing here today? (From Audience: “I don’t know”). You don’t know? Okay, you’re out. It’s a warm beautiful day in June. Wouldn’t you rather be in the sun, enjoying this glorious day? Instead you’re in here, sitting in this room, listening to someone who has trouble speaking, making a speech. Explain that. So why are we here? We’re here because we’re a community of people with one common to do. What are we going to do about this thing called Aphasia? What are we going to do about the fact that for a large number of people in this room, our minds and our mouths don’t match? I had my stroke three years ago this month. And I think it’s safe to say without it, life would never be the same. As a result of our strokes many of us have know what it’s like to not feel or be able to move parts of our bodies. We have know what it’s like not to know the difference between yes and no., or be able to remember our loved one’s names. I mean, if we hadn’t had our strokes we probably would never know what Aphasia meant.
Let me tell you a little story. About three years ago I was on my way to get speech therapy. I would always stop off at the local deli to get some coffee before therapy. The owners who are very friendly and from Brazil, they had a Portuguese accent. After I had been going to this deli for a while I was talking to one of the owners one morning and he said to me “I don’t recognize your accent. Where are you from?” I looked him squarely in the eyes and I said I’m from the country of Aphasia. You know, that little country that is off the coast of South America.
When you have Aphasia it’s because the system that converts thought into words is broken. And once that has happened, then if you want to speak again you’ll have to train different parts of the brain to find different routs for the brain to get signals to your mouth. Our intellect is not affected. And I want to make absolutely clear that everyone in this room understand out intellect is not affected. But our speech is. We have something wonderful because we are the survivors. And that is what we are called, survivors. Because we made it through the valley of death, and came out on the other side as survivors. Many of our brethren did not make it through this valley. But we did. We had a stroke and we’re still here, aren’t we? Yes, say it. Yes we are. We are here.
I’d like to take a few minutes to discuss some of the lesson I have learned along the way. Since I went through this valley of death, I ask what do you do and your mind and your mouth. What do you do when they don’t match? First of all, if your mouth doesn’t work, use your eyes. Your eyes are half way between your brain and your mouth; there must be some connection. Five centuries ago Señor Departes said about the eyes “they are the windows of the soul”. We have all had the experience of being able to tell what someone is thinking, are feeling, by looking in their eyes. Looking in their eyes. Look them in the eye, getting their attention and then begin to speak whatever words you have to say. It’ll work with your doctor, your neighbor, or the guy in the delicatessen whom I spoke about earlier. Grab them with your eyes and the rest will follow. Which bring us to the next lesson I learned. Which is, when your mind and your mouth don’t match, give them time to meet each other. I’m not talking here about a few minutes, or a few hours, or a few weeks, months. It’s a commitment for a lifetime. You’re getting your mind and your mouth to meet and getting them to know each other again. We have got to have patience with ourselves. After I had my stroke I could not speak at all. I could only communicate by blinking my eyes yes and no. I would have to try hard to make a sound. Eventually if I tried hard enough I was able to say one word. Then two, then three words and then sentences. The lesson here is to give yourself time. We are not in a race. There are no winners or losers here. Other people around us, they need to learn, they must allow us the time to say our words as best we can. They should not correct us or finish our sentences, unless we want them to. And they need also to realize that as a result of our Aphasia we sometimes speak more loudly than we should. Don’t we? You can with Aphasia and speaking loudly, some people think we’re angry. And especially when we care very deeply about things. We are sometimes more insistent because of our hampered speech and others should be not alarmed or offended by that. That’s how we operate. We are Aphasia people.
Another lesson which I have learned is that when your mind and your mouth don’t match, keep practicing. After I had my stroke some health care professionals told me I would plateau after six months, and after that I would not get any better. I had my stroke three years ago. And my greatest improvement is in the last year. So I say practice, practice, practice. As long as we keep trying and practicing, we’ll continue to improve.
Another lesson I have learned is find our what resources are available to you and take advantage of them. It was almost a year after I had my stroke that I even knew there was a National Aphasia Association, or that is had a website. www.aphasia.org. Which is chalk full of valuable information. For people like Aphasiates, and co-survivors and caretakers this site is filled with information. And while we’re on the subject of resources it is important to realize that at the present time there is only a limited number of hospitals around the country with sufficiently equipped and staffed to be designated stroke centers. Only a few hospitals, and this is something that must change. Let’s talk about another resource. Let me tell you about the magic of an Aphasia support group. When you are with your group you Aphasia goes away. Right? Not literally, but the atmosphere is such that we are all in this together. So it really doesn’t matter. Unfortunately there are at present, there is a woeful number of Aphasia support groups. Only a small amount of them around the country. And even fewer free-standing Aphasia centers, such as the outstanding Alter Aphasia Center is Madewood New Jersey. And that is something else that has got to change. And we are the ones to bring about that change. We are the ones, us, here in this room; we are going to lay the foundation for a better life for ourselves and for future generations of Aphasia survivors. Water! The speech says, “grab water”, it’s here, so.
So what is it like to be from the country of Aphasia? Well first of all you didn’t choose to go there. You were forced there, sort of like the slaves, who were forced to leave their homes and go to distant foreign places. Against their wills. The country of Aphasia. And explicably. After people are taken to the country of Aphasia many of them are not even told where they are. And something else, at the present time, there aren’t many resources available in the country of Aphasia to help his citizens have a better life. And if that wasn’t bad enough, when new people arrive in the country of Aphasia they aren’t even told about what resources they have. It’s quite a country. Because of this many of the people of the country of Aphasia are frightened. They feel frightened and alone. And the people of Aphasia are going to stay that way, frightened and alone. Unless they learn they are going to have to rise up. Rise up. They are going to have to determine what is rightfully theirs. They are going to have to demand their right to live full and satisfying lives. They are going to have to demand the right and pursuit of happiness. So I say to you as a community, let us dedicate ourselves to the Aphasia Bill of Rights.
Let me go over the Bill of Rights with you. One. No person with Aphasia should be released from any hospital without being told in writing, or hear that they have Aphasia. Two. That no person with Aphasia should be released from any hospital without a written treatment plan, which directs them to resources such as the community’s Aphasia groups and organizations like the National Aphasia Association, and communities of people to help them nurture themselves. Third. That no person with Aphasia should be denied individual therapy, treatment they need, and for as long as they need it, not because they are uninsured. Not because their insurance has run out, or for any other reason. Number four; every person in this country should, if they have a stroke, have ready access to a fully qualified and fully equipped stroke treatment center. Five. That no person with Aphasia should be the subject of any clinical trial research project without their consent. And finally, that our professional medical organizations must establish competency in the treatment of persons with Aphasia. It’s so important for us to feel we have some place to go when we need it, to be able to go to a hospital that is equipped to handle us. Is that asking too much? When your mind and your mouth don’t match, you speak out. We all have the ability to speak out, if not by speech then by written word or drawings or simply with the eyes. We must strive to do so. And if we do someone will always be there so listen. If not with their ears, then with their eyes and their hearts. So don’t be afraid to let people know that you have Aphasia. Speak out. Don’t be afraid to let people know that your mind and your mouth don’t match. Speak out! We are the survivors and the caretakers and the family members and the loves ones of persons with Aphasia. We are the professionals who have dedicated our lives for finding a cure for Aphasia. We are the speech language pathologists. We work with Aphasiates every day in hospitals and clinics and care centers. And we all have to speak out. Say it with me. Speak out, speak out, come on, speak out, speak out! What’s the name of this conference? Speaking out! Again, speak out! We are the young, we are the elderly, we are the people who can’t see a speech therapist any longer because our insurance has run out. What do we say to that? Speak out, speak out, speak out. We are the people who are thought of as being crazy because our voices cannot be understood. We are the grandmothers and grandfathers who don’t know how to say our grandchildren’s names. We are the mothers and father who can’t tell our children how much we love them. Many of our fellow survivors end up sitting by a window in their bedrooms for the rest of their lives because our society lacks the resources and the commitment to enable them to live a full and happy life. And for them as well as ourselves we’ve got to speak out. What? Speak out. I can’t hear you. Alright. We have the right, as much right as anyone to respect and to full and continual medical treatment and the pursuit of happiness and the only way that we’re going to secure those rights for ourselves, for our fellow survivors and for those who come after us is only if we can all come together and speak out. Thank you. Anyone have any question? Go ahead, I’ll answer them. Anyone at all? What’s that? (From audience: “What’s the name of your speech?”) Speaking out. Alright, say is again. Speaking out, speaking out. What’s the name of our conference? Speaking out. Thank you, thank you, thank you. (From audience: “Is it possible to get a copy of your speech?”) It’s all available on the NAA website at www.aphasia.org. It will be there for all of you to have and enjoy.
Different Speaker: I also have one more announcement to make. Most of you were here yesterday to hear Harvey Alter give an inspiring speech in this very room. As you know Harvey is currently the president of the National Aphasia Association. The National Aphasia Association was established eighteen years ago. And for all of that eighteen years, the president was a non-Aphasiate. Finally in January, Harvey Alter was elected as the organization’s first Aphasiate president. As you could tell from the speech yesterday Harvey is a relentless advocate of rights for Aphasiates. Unfortunately yesterday afternoon the board of directors for the National Aphasia Association voted to ask Harvey Alter to resign the presidency. There’s a lot I would like to say about that, but I think I’m just going to let the board’s action speak for itself. Thank you.