Life Goes On

life goes onThe show was groundbreaking for its time. Life Goes On premiered on September 12th, 1989 and lasted four seasons, with the last show airing on May 23rd, 1993. The story was about the life of a typical family. What set the show apart was that Corky, the oldest son, had Down Syndrome, and what made the show unique in my opinion, was that the actor that portrayed Corky, has Down Syndrome in real life. The actor’s name is Chris Burke.

I was in the middle of college when the show began, but I usually took a break from studying every week to watch it. What impressed me most was how the show tackled the rawness of living with a disability. Corky struggled with feeling misunderstood, wanting to be one of the crowd, and often with being left behind in terms of what his sister was doing socially.

I could definitely relate, and over time, most of my college friends could too. I had several conversations after the show was over about how Corky had many of the same challenges that other teenagers do. And that was probably the point that the show’s creators wanted to make. I was a big fan of Life Goes On.

A few years later, I had the opportunity to meet Chris Burke at a disability conference held in Lawrence. Being brand new to my job, I was nervous anyway, but the nerves increased significantly when I realized I had the opportunity to meet someone who I considered to be a pretty big star. It happened in the hallway of the conference center, during a break between sessions. Suddenly, I saw him as he was leaning against a wall and I made my way over. “Hello, Mr. Burke,” My wavering voice was brimming with formality. “My name is Lorraine Cannistra. It’s an honor to meet you, sir.”

He didn’t hesitate. “Hi, Lorraine. My name is Chris. I’m glad to meet you as well. Tell me a something about you.”

For the next few minutes, we had a wonderful conversation. I told him about my cerebral palsy, my new job, and my desire to challenge negative perceptions about disabilities. He asked questions about my family and where I attended college as well. He made me laugh as he autographed my conference program, and as I turned to leave, he said: “Hey Lorraine, congratulations on your new job.”

Over the next couple of days, I witnessed him having similar conversations with many other people and he was always a perfect gentleman. Even when he was in the middle of a crowd of people.

Chris Burke had a major impact on me the day that I met him. He reinforced the idea that all of us are similar and that it is beneficial to focus on what brings us together instead of what separates us.

Recently, I watched a video on CBS news about a trend in Iceland. The pregnant women there are encouraged to go through genetic counseling, and if it is determined that the fetus has Down Syndrome, women are given the option to abort. Most of them do so. A nurse in Iceland who assists in abortions who was interviewed said that she did not see what she was doing as murder. Instead, she was eliminating suffering for the baby with Down Syndrome and for the family. As you might imagine, people with Down Syndrome are starting to fight back. Helene Fien, a 21-year-old woman with Down Syndrome and Autism, this is what she said in her testimony to the United Nations:

“A test that checks for Down syndrome is being used to kill all babies with Down syndrome. In Iceland, Denmark, and China, not a single baby with Down syndrome has been born for seven years. Seven years! The goal is to eradicate Down syndrome in the future.” She urged the UN to stop administering the test. See the full testimony below.

http://nation.foxnews.com/2017/05/30/woman-down-syndrome-addresses-united-nations-i-have-right-live

What disturbed me as well is that, according to the same story on CBS news, 67% of babies with Down Syndrome are aborted in the United States as well.

I have often said that I believe in my soul that disability is a difference and not a weakness. If we start to think that it is okay to eradicate any disease or disability on the basis of a perception of suffering, where is it going to stop? Does somebody with a bad back not deserve to live because they might not be able to do the same things or have the same quality of life as someone who doesn’t have a bad back? This is a very dangerous precedent. I cringe to think about where it could lead.

I would be willing to bet that the vast majority of people with disabilities in society will tell you that they simply play the hand that they have been dealt in the best way that they can.

Because, even with a disability, life goes on.

 

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Posted in Television, Disabilitiy, negative perceptions, changing perspectives, Down Syndrome, Ableism, Look Beyond, Getting to know people | Tagged , , , | Leave a comment

Welcome to my World

parent and child holding handsTo the parents of the child just diagnosed:

Hi, I am Lorraine. These days I am a writer, blogger, and die-hard Astro’s fan. Over the years I have perfected my chili recipe and I like to make cinnamon glazed almonds at Christmas. My friends are scattered all over the country, I have sung solos at numerous weddings, and the launch of my first book is only a few months away. I am grateful for more things than I can count, but especially my disability.

Welcome to my world.

It is totally understandable that you are grieving right now. The change in your family dynamic. The lost expectations. The life you knew that was so comfortable and familiar. The range of emotion you are experiencing at the moment might be all over the map. Anger. Fear. Sadness. Confusion. Overwhelm. Take all the time you need to feel every bit of it. Doubts and questions will come in waves. And the unknown can feel completely encompassing.

As an adult who is living with a disability, I can tell you that your journey will be different than most. But different is not good or bad. It is simply different. There will be ups and downs. Joys and sorrows. Agony and amazement. And each journey, whether it includes disability or not, is unique. You will learn incredible lessons.

My disability has taught me to slow down. To notice the little things that sometimes get overlooked. To celebrate small accomplishments. To realize that it is a big deal if I do something successfully that I could not do yesterday.

My disability has helped me to be more tolerant than I think I would have been without it. Since I don’t like other people to judge or make assumptions about me, I put effort into not doing the same with others. It is important to me to accept everyone around me just as they are.

My disability has made me intolerant of injustice. I will cry “foul” with most people who treat me “less than” and I won’t sit still when I or the people around me are being treated like they don’t matter.

My disability has helped me to use my voice. I have been known to advocate for what I need or the needs of others like me. Sometimes loudly. Always passionately. And I won’t give up until there is a resolution to an issue I am facing. People have told me more than once that the most frustrating thing about me is that I won’t go away. To me, that is the ultimate compliment. 🙂

My disability has made me unafraid of the medical community. I will listen to what my doctors have to say and I will ask questions. Then I will say what I think. Since I am the one living with my disability, I am the one who knows what is in my best interest and what works for me. The medical professionals that I respect and go back to are the ones who understand that I know myself well and it makes sense for us to work together.

My disability has enabled me to experience things and to meet people that would have never been part of my life otherwise. Some of my biggest mentors were other people with disabilities. Not knowing them or having them share their wisdom would be a big loss for me.

My disability has taught me that I am a survivor. The road has not always been easy and I have faced some challenges that I thought were too intense. Coming out on the other side has required me to look outside the box, to look for creative and unconventional solutions. On most days, my biggest motivation is my inner “I can do it!”

One suggestion would be to love your child ferociously. Help them to feel it and know it at the core of their being. Even so, tell them several times a day. There will be those around you who will never understand, and out of their ignorance, they may treat you or your child badly. From the person who totally ignores your child and pretends he or she is not in the room to the person on the other end of the spectrum who magnifies your child’s medical flaws and makes them feel like a freak show at a carnival. People who don’t get it can also live anywhere in between. There are times when the only antidote for people who are clueless is a really good self-esteem. And a sense of belonging.

As soon as you can, include your child in the goals and plans for the future. What does he or she want to physically be able to do? What does he or she not mind having help with? Is he or she okay with not doing everything that he or she is physically capable of? Please include your child in that decision-making process. Ultimately the outcome will affect their life individually.

My other suggestion is to make sure your child’s life is about more than disability. Allow them to laugh and play and take a day off from therapy once in a while if they can. Enable them to pursue hobbies that bring joy to their soul.

There are times when my disability can get in my way. But most of the time I am grateful for it. I wouldn’t trade my circumstances. I love the life I live, frustrations and all.

Welcome to my world. It’s a pretty wonderful place to be.

You can do this. I believe in you!

Lorraine

 

Posted in Beginnings, changing perspectives, Disabilitiy, Gratitude | Tagged , , , | Leave a comment

Remember the Progress

progressIt was a practice that was living up to its name because I certainly wasn’t improving. That day on the track I couldn’t make anything work. My body was just not in synch with my chair. The wind was almost blowing me backward and I was having trouble staying in my lane. Much effort was put into getting it all together and on that day it just wasn’t going to happen. After more than an hour of disastrous laps, I vented how I was feeling to one of my coaches. “I can’t do anything right today, and my times are a mess!” I wailed. “At this rate, there is NO WAY I am going to qualify for the national competition this summer! What is the point?” The thought of quitting everything I was doing in sports was so close it scared me spitless.

My coach was quiet for what seemed like a long time. “Lorraine,” he said gently, but in a voice that made me listen. “I know today’s practice has been hard for you and on days like this, it seems like nothing will ever go right again. But if you keep working and giving this all you’ve got, eventually you will get where you want to be. It’s on days like this that it is good to remember the progress. A few months ago, your time in the 400 meter was about twenty seconds slower than your average is right now. Six months ago you didn’t think you would ever get the hang of using your track chair. When you first started racing, pursuing national records in your track events wasn’t even on your radar. You had a less than stellar practice today, but don’t lose sight of where you have come from. Take a few minutes to breathe. Feel free to go home early if you need a break right now. But as you feel the frustration I encourage you to also remember the progress.”

*************************************************************************************
A few days ago, a caregiver and I set out to run some errands. Cash some checks. Make a payment on my Target card. Get a haircut. Grab some lunch. There was nothing to make me think that this day would be anything but typical.

Since there is a branch of my bank in Target, we went there first. I went up to the teller and let her know I had some checks to cash. She told me to put my bank card in the machine on the counter. Doing so is usually a bit out of my reach. The cord attached to the machine isn’t long enough to make it to my lap and the machine itself is bolted to its spot. Therefore I usually have a caregiver swipe my card for me. And that usually means the rest of the interaction is between my caregiver and the teller. It’s understandable since my caregiver does what is necessary to complete the transaction. But a few days ago, the particular teller who was there never stopped asking me questions. When she had money to give me she looked me directly in the eye as she did so. Then she wished me a good day.

When we pulled in the parking lot of the restaurant we had decided on for lunch, a man who must have been the manager asked us if we needed his help getting my wheelchair out of his car. We declined, but I was so impressed he thought to ask. Not many people do that.

When we went to the place I go to get my haircut, a customer that was waiting took the initiative to open the door for us. The woman who usually cuts my hair was not available so one of the other stylists asked me if I wanted to wait for my regular hairdresser or if she could cut my hair. I was grateful she gave me the choice and I opted for her. She made polite conversation with me during the entire process. When it was time for me to pay the bill, she pushed my wheelchair to the counter and she asked me what way I wanted to face and how it would be easiest for me to sign the credit card receipt.

The whole experience made me think. I spend a lot of time writing about situations where I am not treated respectfully. I think it is okay to point that out. But as my caregiver and I were running errands the other day, there were numerous interactions where people could not have been nicer. And they were back to back.

I’ve said often that I long for a world where everyone is always treated equally. Society isn’t there yet.

The next time I get frustrated because somebody treats me “less than,” rather than let the anger marinate all day, it would probably be in my best interest to take time to breathe and remember the progress.

Posted in Attitudes, Disabilitiy, Helping people with disabilities, inclusion | Tagged , , | Leave a comment

Take a Knee

When I first heard about the new program, I was psyched beyond measure. The place where I was receiving physical therapy had set up a gym in part of their space, and they were inviting people who received services to work out at a reduced rate. After going over my budget, I signed up. Although I wanted to get my core stronger, which was going to help with my transfers, my primary goal was to figure out a way to bend my knees. Doing the latter would mean that I could get myself back into my wheelchair if I ever fell, and if I could bend my knees there would be a greater chance that I could put my socks and shoes on by myself. Bending my knees would mean more independence for me. Once my membership dues were all paid, I signed up to work out for the first time. Transportation was arranged. I was working on getting into the “athlete” mindset before I left on the designated day when the phone rang.

Since I was in a different part of my apartment at the time, I listened to the message a few minutes later. “Hey, Lorraine. This is xxx from yyy therapy program. I noticed that you signed up to work out in our new gym tonight but we have a policy against people with disabilities working out by themselves, so I am canceling your appointment. Have a good day…”

What? Was this a joke?

It never occurred to me that I wouldn’t be able to work out on my own. Various weight machines were the same I had used in high school. In my workout, I hadn’t planned to do anything I wasn’t certain that I was capable of. I had signed the same liability release that everyone else did but it wasn’t enough. Unless I had somebody with me, I was told when I called back, I wasn’t welcome to use the facility. And nobody had mentioned this policy before they had taken my money. There wasn’t even a conversation. I had simply been informed that I would not be allowed to do what I had paid to do because I had a characteristic that was beyond my control. This wasn’t the first time I had experienced true discrimination, but it does not get any less degrading or dehumanizing over time. Injustice leaves you with an emptiness that is cold, heavy and hard to carry. It’s like a broken heart that you just can’t mend.

The letters I wrote the therapy place went unanswered for more than two months. They ignored me until I mentioned I was considering contacting the Lawrence Human Rights Commission because this policy was illegal under the American’s with Disabilities Act. I got my money back about ten weeks after I got the phone call telling me not to come. But the refund didn’t make me feel better. To my knowledge, the policy has never been changed. Situations like that one occur in my life to varying degrees at least once or twice per month.

For the last few months, I have been trying to process and figure out how I feel about the movement started by Colin Kaepernick in 2016 about athletes taking a knee during the national anthem. I don’t believe their doing so is disrespecting the flag or what it represents. In fact, I read that Kaepernick began kneeling instead of sitting during the anthem out of respect for the military.  A quote in my Facebook feed recently put it like this: “Saying that athletes kneeling during the anthem are about disrespecting the flag is like saying that Rosa Parks didn’t sit at the back of the bus because she was protesting public transportation.”

Instead, I believe that by kneeling during the national anthem, these players are calling attention to the fact that America today is not what it was intended to be.  The America that the military is defending is not supposed to be riddled with racial inequality.  The second paragraph of the Declaration of Independence clearly states. “All men are created equal…” It’s a principle this country was founded on and yet not every one of its citizens is treated equally.

I will never know what it is like to be a person of color who fears for my safety during a routine traffic stop. I will never know what it is like to be persecuted for my religious beliefs or be the target of a hate crime. But I have experienced discrimination and been in the presence of people many times who whole-heartedly believed that they were better than me and they, therefore, thought it was okay to treat me “less than.”

I would not wish those things on anyone.

Do I support Colin KaepernickColin Kaepernick and all the other athletes who choose to “take a knee” during the national anthem? You bet.

Because when I had an opportunity to work on bending my knees, it was taken away from me.

 

 

 

Posted in Ableism, Attitudes, Disabilitiy, Discrimination | Tagged , , , , | Leave a comment

I ADAPT!

 

ADAPT protest

An ADAPT protester getting pulled out of her wheelchair and arrested in Washington D.C.

We will ride! We will ride!

 

I must have shouted that phrase thousands of times on that summer afternoon, the blazing sun created an intense heat that only magnified the issue at hand. I was part of a group of people with disabilities that were protesting a wrong, in Topeka. At the time, the Greyhound Bus Company had a policy that people with disabilities could not ride the busses unless they had a caregiver who was going to accompany them on their trip. They could not travel alone. This was about choice. And dignity. And autonomy.

It was a few short years after the Americans with Disabilities Act was passed, and this policy was blatant discrimination. One of the things that the ADA says is that it is illegal for a business to have a policy that applies to people with disabilities that does not also apply to the general population. To add insult to injury, Greyhound also had a policy that if a person with a disability needed assistance on and off the bus, the fire department would automatically be called to provide whatever help was needed. Several people with disabilities had complained that they felt like they were on display as they got on or off the bus. It was common for transfers to take place in front of numerous other passengers.

Earlier that morning, Bob Mikesic, one of my coworkers at Independence, Inc. asked me if I wanted to go with him and join members of ADAPT in Topeka, who were going to protest this policy outside the Greyhound bus terminal. ADAPT is a grassroots disability rights organization, made up of people with disabilities and their advocates, who protest loudly when they see an injustice. They have been known to be incredibly effective, and equally incredibly radical. So, at first, I hesitated. In my mid 20’s, I was shy and socially awkward, and I spent a significant amount of time with my head down, just trying to follow the rules. In short, back then I was much less of a rebel. But the advocacy I had learned during my employment was starting to sink into my soul. I knew this policy was wrong. I knew that people with disabilities deserved to be treated as equals. And I was learning that some wrongs don’t become “right” until those with rights fight back. It might have been my first act of civil disobedience, 🙂 and if I were being totally honest, the more time that passed that day, the more excited I became.

As soon as we got to Topeka, I could feel the energy in the air. Changes are not made when people are passive, and many people with disabilities from around the state were drawing from the energy of their frustration as they got ready to voice their opinion concerning these Greyhound policies. Armed with a sign that said, “Wheelchairs can only take us so far…” I added my voice to the chanting.

We will ride! We will ride!

At one point we locked arms and formed a huge circle. Sign language interpreters were translating the phrase repeatedly. Some of the protesters bought bus tickets for the same day, just to see what would happen. Some of us talked to the media who had arrived. And others were chanting the whole time…

We will ride! We will ride!

As I got in the car to return home, my voice was hoarse but my heart was full. I laid in bed that night turning over the experience in my mind dozens of times. And as I did so, I realized that something deep within me had shifted. I understood that advocating for what I needed in my life was not only okay but often necessary. Many people in my life were going to try to take my power away from me. Sometimes they would succeed, but I could always do my best to take my power back.

In the last few months, members from ADAPT have protested in cities across the country, in efforts to make the public aware what the GOP health care plans would mean for people with disabilities. Some got arrested and spent a few days in jail. And then they kept going. As much as possible, they explained what they were doing and why it was important to whoever they could get to listen. They made the point that, because disability has an open enrollment policy, Medicare and Medicaid programs were important for everyone.

I have spent more time than I usually do, during this administration, calling senators and representatives and telling them my story. I want them to know what various policies and plans will mean for my life as a woman with a disability who wants to remain in the community for many years to come. There are so many others like me.

In many ways, I am still that shy and socially awkward girl who spends a whole lot of time with my head down, just trying to follow the rules.

But when it is necessary, I ADAPT.

Posted in Ableism, Accessibility, choices, Disabilitiy, Government benefits, Medicaid, Medicare, National ADAPT | Tagged , , , , | Leave a comment

Me Too…

There is a beautiful movement on Facebook and Twitter right now and it seems to have gained momentum in the last few days. Women are being encouraged to post the phrase “Me Too” as a status on their wall if they have ever been sexually abused or harassed in any way. The point is to draw attention to the magnitude of the problem. I don’t love what it means that more and more of my friends are participating, but I do love that it seems that as a few people find their voice and speak out, others seem to find their courage.

Decades ago, when I was pursuing a Master’s degree in Rehabilitation Counseling, one of the classes I took was The Phycological Aspects of Disability. The underlying theme was that people with disabilities are often seen as second-class citizens in our society, in a wide variety of ways, and that can have long-term effects. We explored topics such as self-esteem, socialization, and isolation. We also talked about abuse, and the numbers were staggering.

At the time, the statistics were that one in seven boys would be abused in their lifetime, and one in four girls would be also. But if you added disability into the mix, the number rose to one in two. 50% of people with disabilities would be abused during the course of their lives. The reasons for that are somewhat obvious. If someone needs help in and out of the shower or in and out of bed, they are much more vulnerable than someone else who can do those things on their own.  I read some articles about how some people who are deaf or nonverbal were often abused because the abuser didn’t think they “could tell” and some more articles that stated when a person with a disability tried to report being abused and they were not believed because they “must not know what they are talking about.” All of that just makes me want to hurl every morsel of food I have ever consumed.

But some things inappropriate are also more subtle. The fact that people with disabilities are often subjected to situations where they feel uncomfortable and exposed is beyond offensive. Our class talked about how those situations, for most people in society, are not given a second thought. The situations that follow might not be abuse in the general sense of the word, but what happened to me was uncomfortable, and it put unwanted attention on my body. And I felt violated every time. That is inappropriate. Unacceptable. Most definitely not okay.

  • When I worked at the Center for Independent Living in Lawrence, I had a consumer who came to a few appointments with me literally half-dressed because her caregiver had shown up later than expected to get her in the shower. I offered to put a blanket over her so that she would at least be covered. How many people without disabilities would be sent to an appointment in public without all of their clothes on?
  • Many years ago, I had an appointment at KU Med. I went for an ultrasound that doctors had ordered to see if they could find a reason for my kidneys misbehaving. Obviously, in order for the test to be accurate, I had to take off most of what I was wearing. When the test was over, the technician told me she “didn’t have time” to help me get dressed before she publicly pushed me down the hall and parked my wheelchair in the place where I was supposed to wait to see the doctor. Would she have expected another woman of my age to tolerate moving around hallways in a doctor’s office before they had the chance to pull their pants up?
  • And during a recent trip to the emergency room, I told a nurse that I would need help changing into a gown. A few minutes later a nurse’s aide came in. Without a word of greeting, without asking my name or giving me hers, she made moves to start undressing me. For weeks I wondered if she would have done the same thing in the same way if I didn’t happen to have cerebral palsy, but instead simply needed help changing because I had broken an arm or a leg.

In addition, I have had a number of caregivers over the years who physically or emotionally overpowered me because they knew I couldn’t get away and who knew I was too weak to fight back. Some people seem to think that I am pretty easy to victimize…

What I ask is this:

Whenever anyone says that they were abused or treated in a way that made them feel uncomfortable, please listen. Believe them. And offer whatever support that you can.

Does it enrage you that the general population does not seem to have the same respect for boundaries when it comes to people with disabilities as they do for others in society?

Yeah. Me too.

Me too

 

 

Posted in Ableism, boundaries, caregivers, cerebral palsy, communication, Deaf, Disabilitiy, Helping people with disabilities, What some people don't think about | Tagged , , , | Leave a comment

You Need to Let Go…

letting go quoteIt’s not my line, although I wish I could take the credit.

This morning I spent a few minutes watching a Ted Talk about letting go. Jill Sherer Murray talked about a relationship in her past. She had dated this guy for twelve years. She wanted to get married. When he didn’t show up for an appointment with a realtor to see a new condo in their area because “something important came up”, she knew it was time to move on. She made the decision to do so, she said, “because her life was good. It just wasn’t good enough.”

I have spent a fair amount of time in recent weeks thinking about what I really want. Some obvious things come to mind. I want a group of friends that I socialize with often. I want people around me to understand what I am about. I want the book I have written that is coming out in May to have a positive impact on a whole lot of people. I want a full team of phenomenal caregivers available to me all the time. Those are just a few. The last one is the most pressing right now.

Given the circumstances of the last few months, there is one thing I am certain that I don’t want. I never want to live in a nursing home; especially in the near future. That is my biggest fear. And with the recent GOP efforts to repeal healthcare including drastic cuts to Medicaid funding, coupled with the severe shortage of caregivers in Kansas these days, the possibility seems like it is closer than ever. There have been times when I have been caught up in the “It’s not right and it’s not fair” of it all. Especially because there are numerous people who have the power to make decisions that affect my livelihood in majorly significant ways, and most of them won’t ever meet me. That is beyond terrifying.  It has also become clear to me that if I know going into a nursing home is something that I absolutely don’t want, I am going to have to let go of a few things.

If I want to remain in my home for the long-term, one of the things I might have to do is learn to do more for myself than I currently can. For years I have told myself that there is probably no reason for me to go to physical and occupational therapy solely to manage my cerebral palsy. I know how to do stretches to maintain my flexibility, and I know how to get around by myself. But if I want to learn how to put my own socks and shoes on or dress myself more efficiently, I might have to see if my doctor would make a referral for some sessions.

I am going to have to let go of the idea that therapies like those were behind me.

But I don’t think letting go is an entirely bad thing. It’s just scary.

The power of letting go is that it enables movement. I’m not just talking about little things like going to therapy when I didn’t think I would have to, but bigger issues as well. In order to experience the peaceful and positive things in my life most of the time, I am going to have to let go of the anger and pain of injustice even when those emotions are justified.

One of the biggest lessons I have learned over the years is this: If people stay stuck because things happen that are not right or not fair, then they aren’t going to get anywhere. Letting go lets you be who you want. Letting go takes your power back. Letting go lets you decide what is most important to you. Letting go also gives a situation the finger and says “Screw it. I am not going to let this win.”

There are lots of things in life I can let go of:

Bad memories
Bad decisions
The need to be perfect
The need for approval
The need to be right
The need to put other people first all the time
The need to be strong all the time
The need to always play by the rules
Caring about what other people think
Negative opinions about myself or others
My expectations
Who I used to be
Who I thought I would become

And the list goes on…

Tomorrow I am going to call my doctor and talk to her about going to physical and occupational therapy in the foreseeable future.

Because as Jill Sherer Murray says:

Whatever you really want in life, you need to let go for it.

 

 

Posted in caregivers, changing perspectives, Disabilitiy, Learning to let go, Physical therapy | Tagged , , , | Leave a comment