Peace Talks Radio co-founders Paul Ingles and Suzanne Kryder talk about Suzanne’s 2012 Arteriovenous Malformation incident which resulted in some bleeding in her brain and left her with stroke-like symptoms of compromised speech and movement. Her recovery continues.
Suzanne Kryder: I have come a long way. Like you said, I am now walking without a cane. I can talk enough so that people can understand me.
Paul Ingles: What you’re describing is that your relationship with the world starts to change really after this event. You’re hypersensitive to things that normally before weren’t issues; riding in a cab, moving, walking, being with people.
Kryder: Yes, and I went through this phase of really being embarrassed to be out in the world. Because I was falling over, I had a walker, I looked 80 years old. Nothing against people who are older, but I was 57 going through this and I’m super fit, so it was really hard to, all of a sudden, have everything taken away. I still feel sad about that.
Ingles: You told me you were having to go through a mourning period.
Kryder: Yes, well I had a meditation teacher who is also a therapist say to me, “Suzanne, of course you are upset. You lost the most important person in your life.” When he said that, I realized I should be grieving. This is like a mourning. Because I had lost the ability to drive. I don’t see well. I had lost the ability to hike, camp, backpack, make choices about everything I do. So I’m really a different person and I really lost this person who was so important to me- Suzanne Kryder. She was so healthy and so fit and so great. I loved her. She is gone. She will never be back. Now I’m learning how to mourn her loss. I recently said to a friend of mine who is a therapist too, “How long will I be mourning this loss?” And he said, “I don’t know, maybe your whole life.”
Ingles: What kind of interactions have you had with people that model an empathetic or a gap-closing protocol that feels useful to you. Like “that’s how I’d like to be treated?”
Kryder: I have three things I’ve come with; Q, A, H.
“Q” is questions. Ask any question you want. I don’t care. I will talk about my disability.
“A” is advice. Do not give advice. I don’t need your advice. I’m 59 years old. I don’t need your advice. I’ve had people tell me, “You need to eat this.” “You need to do this.” “You need to do acupuncture.” “You need to do tapping.” “You need to do cranio-sacral therapy.” I’ve had people say all of these crazy things. Don’t give me advice, okay?
“H” is help. Don’t give me help. Don’t come up and try to make me walk a certain way. Don’t hold onto me. Don’t give me help. Ask me; “Is there anything you want help with?” I will say, “no.” What I say to people is that if I am picking up a knife with the pointed end, tell me. If I am going to walk into traffic, tell me. But you would do that with anyone, but anything else, I do not need your help. Giving help that is not asked for is inappropriate.
Ingles: Have you asked advice from anybody like therapists or medical people?
Kryder: I do. Physical therapists. Speech therapists and even doctors, but you know what? They don’t know what your life is like. They have seen people who they have helped in physical therapy. I do want to know about that, but it’s not like someone who is with you 24/7. I have had a friend say, “This is like aging.” No, this is not aging, okay. It’s not aging. It’s having stuff in your life that you had taken away in an instant. It’s a bummer.
Ingles: It’s a bummer and it makes you angry sometimes.
Kryder: I’m angry a lot, yeah. I know I could meditate, I could take happy pills, I could relax, but there’s something about me being me and I’m just so interested in how I am reacting to this disability without what I call “laying on stuff.” I’m just me and this is a bummer. I’m telling the truth.
Peace Talks Radio host Suzanne Kryder talks with Dr. Susan Stuntzner, professor in the department of leadership and counseling at the University of Idaho. Stuntzner suffered a spinal injury at the age of 19. She is author of the book “Living with Disability: Finding Peace Amidst the Storm.”
Suzanne Kryder: What does research say about persons without disability? Do they often have biases and insecurities about people with disabilities?
Susan Stuntzner: Yes, actually there are people without disabilities who may see someone who has a disability and then feel threatened. It’s kind of like the person becomes a visual reminder of their own mortality, what the research calls “death anxiety. “ And there are others who live without a disability who may try to socially distance themselves from people with disabilities because they’re concerned about being socially ostracized by their peers or friends, so that does definitely happen.
Kryder: Talk more about this “death anxiety.” What is that?
Stuntzner: When someone who does not have a disability sees someone who does, they might have conscious or unconscious thoughts such as “What if that happened to me?” Or there is a tendency for people to want to blame the person with the disability because then it gives them reassurance that if they do all the right things, a disability will never happen. But what people don’t realize is that sometimes life just happens. You can make all positive choices and do all the right things according to our societal moral conduct and still have a disability.
Kryder: You have a background of a disability as well as you understand the psychological reasoning because you have a counseling degree. So why do some people feel their mortality more than another person who will not blame the disabled person?
Stuntzner: Well, I think part of that comes from the meaning that people ascribed to it within our own society, Westernized society. People often view living with a disability as a negative thing, something that they would rather avoid or that, if it occurs, it’s almost equated with a death sentence to the extreme. What they don’t understand is that many people with a disability find positive things that develop in their life because of their disability. For example, some people may report that they have a deeper level of friendship or that they have found more meaningful purpose in life or somehow their life has been positively transformed. People who cope well have found a way to the other side so that their disability becomes a positive transformation.
Kryder: What would you add to this list from your book? I agree with your list and it’s of things that non-disabled people shouldn’t do if they want to make peace with disabled people. One of them is to offer unwanted help. I hate that. Another is to assume disabled people can’t do something. Another one is make a disabled person into a superhero. Explain what you mean by “Don’t make a disabled person a superhero.”
Stuntzner: Well, sometimes when you have a disability, people will treat you as though you are Superman because you have defied the odds or you have overcome a situation that society or people without disabilities would deem amazing. And so they may say something like, “Oh wow, you’re just great! I don’t know how you do that! I could never do that.” The catch to this is that many people who, I believe are well-meaning individuals who don’t have a disability, think they’re doing something kind by telling you how great you are and how well you’re doing. But the harm is that the focus is only on your disability. It’s not about, “You’re wearing really great shoes today,” or “I really like your outfit.” Some kind of conversation that would be normal among people who don’t have disabilities
Kryder: Susan, explain what “passing” is.
Stuntzner: Sometimes people with a disability may feel the need to conceal or act as if they don’t have a disability. Where you may see this is when someone has an invisible condition, perhaps it’s a mental health diagnosis or a learning disability or maybe it’s a health condition such as cardiac problems that maybe isn’t noticeable to the average person. And so rather than have the attention focused on them and their disability, they will try to act as if it’s not there and therefore “pass” as someone who doesn’t have a disability.
Kryder: I do that a lot. It’s really bad, but I walk kind of funny and I try to pass it off like I’m walking normally. And I do that because I feel that I should have as a goal to mainstream back into the non-disabled world that I came from. So what should people do who are disabled instead of passing?
Stuntzner: Well, I think a better option may be to be forgiving of yourself when you’re not able to pass or to pass all the time. Certainly people who have an invisible disability have the option of not disclosing or making their disability noticeable to other people, but when it’s visible, people may do the best they can to conceal it. I’m certainly not saying that a person shouldn’t try to do that, but I’m also saying that it’s important to be okay with who you are and to forgive yourself if you’re not able to pass.
Kryder: I get the sense from your book that you believe that there is really no reason to talk about our disability. But that goes against one of my three requests. I request that people ask any question they want. I thought that was a good request to me because it teaches people to ask questions. It also gives me an opportunity to educate people. What does the research say is the best thing to do to make peace?
Stuntzner: Well, I think you could ask five different people and probably get five different answers. There will certainly be some individuals such as you that feel it works better for them to educate people. In my book I talk about that. Really what is most important is to find what works for you. Within the research, we know that it helps to have a sense of humor, to not take yourself quite so seriously. Sometimes if something is brought to your attention or your disability is brought out in the open, if there’s a way that you can use that situation in a humorous fashion to put people at ease, that tends to work a little bit better.
Peace Talks Radio host Suzanne Kryder talks with three attendees at a Fall 2013 conference on disability issues held in Albuquerque, New Mexico
Berg: I’m Dustin Berg. I’m from Albuquerque, New Mexico. I’m a T7 vertebrae paraplegic. I was in a motorcycle wreck in 2003 where I barely survived and broke a whole bunch of bones including my T7 vertebrae which is roughly in the middle of my back which caused paralysis so I use a wheelchair now.
Everybody, whether they’re able-bodied or disable-bodied, can focus on a list of things they can do and that can go on forever or they can focus on a list of things they can’t do and that list can go on forever. It’s just which list are you going to focus on. For me, that was very big in my accepting my situation and then trying to abandon a lot of my fears about my situation and just go on with my life and try to pursue the opportunities that are available. I realize that it’s definitely not the end of my life and I can still live a very full and fulfilling life.
Kryder: In a Rolling Stone article with Michael J. Fox who has Parkinson’s, he said in the article: “If I walked into a room with God or Buddha or Bill Gates or Sergey Brin or whoever and they could figure out a way to fix it, I don’t think I’d do it because I wouldn’t have gone through what I’ve gone through and I wouldn’t have had the experiences that I’ve had.” What do you think about that? If someone could change you, would you change?
Berg: That is a really tough question. I understand what he’s saying. You definitely grow as a person. You add tons of character and you grow mentally in ways that you couldn’t have grown without dealing with the experiences you’ve dealt with. I wish I could go back and walk but then keep all of the experiences, even the hard ones because they’ve made me a better person. That’s tough. I want them both.
Kryder: What do you mean by a “better person”?
Berg: The direction I’ve taken with my life because of my situation has actually made me more beneficial to society because now I take disabled children out and try to share outdoor experiences with them. I take a bunch of adults out and do different kinds of trekking programs and things with people in wheelchairs. I give back more than I probably would have. It’s hard to tell though. Who knows what I would have done, but going through what I’ve been through changed what was important to me and being a positive piece of society became my number on goal.
Murray: Hi, my name is Jane Murray. I’m from Mcintosh of the East Mountains [New Mexico]. I have PTSD, fibromyalgia and chronic fatigue.
Kryder: What is or was the hardest part about being disabled?
Murray: The fact that my disabilities are not obvious; I’m not missing any limbs, I’m not in a wheelchair, I look pretty normal, makes people usually say, “You don’t look sick,” but there are things. I would like people to know that not everybody has an obvious handicap, disability or altered ability or whatever you want to call it.
Kryder: What do you say to a person who doesn’t know that you have an altered ability if they say something stupid?
Murray: Well, if at all possible, I try to treat them with compassion because they don’t know and they’re not aware. If I’m having a really bad day and I know that I will react badly, then I’ll walk away, but if I have a chance to educate people, I will.
Kryder: What motivates you to be peaceful in these relationships?
Murray: If we want to go into quantum physics here, which not many people do, we are all one. Just because we look different, just because our atoms are arranged differently, we are all made up of the stuff of the stars; the planet, the earth and everything in it. We are all related and we are all connected whether we like it or not. The way we treat others is how we are treating ourselves usually.
Kryder: From my experience, I was not disabled until 16 months ago. I had a brain problem. I had this problem of wondering whether or not I should go out and let people see me and maybe get angry (because I get angry) or should I stay in? What advice do you have about that?
Murray: I would say that you might be able to work with the anger as long as you are aware that you are doing it. Use the mindfulness technique and be aware of your actions. Be the part of you who is the watcher that watches your body and your ego and your emotions go at it and learn to have a little distance to recognize it and then maybe change. Sometimes you can’t change your thoughts, but you can change your behaviors. Sometimes that allows you to go out and live in the world because, I’ve learned from personal experience that isolation will make you even crazier. It’s like Rodney King said years ago, “Why can’t we all just get along?” Live and let live. That would be the advice I have. Most people can’t live with other people until they learn to live with themselves.
Gonzalez: My name is Maria Louisa Gonzalez. I’m originally from Santa Fe, New Mexico. I have CP, cerebral palsy. When I was born, the doctors told me that I was not going to make it to be three. I proved everyone wrong.
Kryder: How old are you now?
Gonzalez: I’m 30. Having a disability doesn’t exclude me from anything. People treat me like I’m broken or like I’m mentally retarded. People call me “stupid,” and I tell them, “Don’t call me that because I’m not [stupid.] I have a mind and I know how to use it.” People who don’t know me just don’t want to get to know me and get to know what I’m like.
Kryder: What do you do to make peace with people who do something you don’t like?
Gonzalez: I just let it go. People are going to be people. You can’t change them.
Kryder: That’s awesome.