Nevertheless…

she persistedNobody could have predicted it. In the last few weeks, the phrase has become nothing short of common. “She was warned, nevertheless, she persisted.” It was a quote from Senate Majority Leader Mitch McConnell when he was asked about shutting down Elizabeth Warren on the Senate floor during the nomination hearings for Jeff Sessions to be appointed the Attorney General.

Senator Warren had been reading an excerpt from a letter written by Coretta Scott King in 1986, opposing the nomination of Jeff Sessions, to be a federal court judge at that time. After much protesting, eventually, Senator Warren was asked to take her seat.

Since this incident occurred, many of my friends on Facebook have posted pictures of powerful women throughout history and included the now famous caption “Nevertheless, she persisted.” Pictures have been posted of women protesting injustice and getting arrested, and many other women who simply did not accept the status quo. All of the pictures I have looked at with this theme have had an impact on me. I even saw a picture of a woman who got the phrase tattooed on her wrist. All of that is exceptionally cool.

My favorite by far is a drawing by Courtney M. Privet, who drew a female wheelchair user and a list of obstacles she may face or things she may hear every day. And then she put the caption at the bottom. See the picture included with this post. Some of the following phrases are included in her picture. Others are mine.

Phrases like:

Your significant other must be a very special person.
Do you actually have a job?
Let me help. No, really, let me help. I don’t mind.
I had to use a wheelchair for a week once. I understand.
I guess my life isn’t so bad.
Do you have a license to drive that thing?
Cripple.
Gimp.
Handicapped.
It’s good to see you out and about.
How do you have sex?
You are too pretty to be in a wheelchair.
I only parked there for five minutes.
If you really had enough faith, you would be healed.
I can’t imagine living the way you do.
You are SO inspirational. (from a stranger)
It is amazing what you can do. (from a stranger)
Do you know ______? She is in a wheelchair too.
Sufferer.
Victim.
Confined.
People like you…
Poor thing.
Who takes care of you?
You have “special needs.”
Sometimes I even forget you are in a wheelchair.
There is only a little step up to the door, you can get over that, can’t you?
Helping you is my good deed for the day.

Having been a wheelchair user as long as I can remember, I have heard all of these things and many similar sentiments more times than I can count. And even though I try hard to brush them off before they get under my skin, they can weigh me down sometimes. I am not going to lie. I find it frustrating when people consider me “less than” or “different.”

Nevertheless, she persisted.

A few years ago, when I was in the hospital with kidney complications, one of the pastors from my church came to visit. Knowing that this was my third hospitalization in about two months, Dave was aware that I was pretty discouraged, and when he walked into my room, he could also tell I was in significant pain.

After we had chatted for a few minutes, he asked what kept me going. I hesitated. That is a difficult question to answer. What is it that keeps me from giving up whenever I encounter an obstacle? I don’t really remember how I responded at the time.

If he asked me that question today, I would be more confident in my answer.

Nevertheless.

My disability is always going to present challenges in my life. And there are times I have to remind myself to channel my inner “Elizabeth Warren” when my own strength is less than sufficient.

Nevertheless, I have courage.
Nevertheless, I  believe in myself.
Nevertheless, I pursue my dreams.
Nevertheless, I  make my own choices
Nevertheless, I  persevere
Nevertheless, I contribute.
Nevertheless, I  advocate to make things better.
Nevertheless, I fight injustice.
Nevertheless, I move forward. Why? The alternative stinks.
Nevertheless, I am going to live the life I want, on my terms.

I know most people are well meaning. I also know that most people probably don’t have much experience interacting with people with disabilities. I totally get that.

There are just some days when even unintentional careless words, actions or assumptions still take their toll on me.

Nevertheless.

Posted in Ableism, Advocacy, changing perspectives, communicating respect, Disabilitiy, negative perceptions | Tagged , , , , | Leave a comment

More the Same than Different

More the Same than DifferentIn her poem “Human Families,” one of Maya Angelou’s lines is “We are more alike my friends than we are unalike.”

__________________________________

The trip was more than thirty years ago, but because the lesson I learned was so profound, in many ways it feels like it was just last week. I was in high school and the sports team that I was on for people with cerebral palsy traveled to a regional competition in Fort Worth every year. That weekend was the first time I had traveled as part of that team, and except for a few years at summer camp, at that point, I had rarely traveled without my family.

Excitement brewed within me as I got on one of the vans to make the six-hour trip. Missing a day of school was simply a bonus. I had worked out hard for the previous few months in several events, and I was hoping I would do well enough to qualify for the national cerebral palsy games later that summer.

As soon as we hit the road everyone began to relax a bit. Since I was in the passenger’s seat up front, almost immediately I heard “Hey Lorraine, turn up the radio. I love this song!” We all began to sing along with the music (’80s tunes are still my favorite) and as the miles passed, jackets came off, snacks came out and several lively conversations were taking place simultaneously.

At the motel, I was rooming with some of the other female athletes. Their cerebral palsy was not quite as severe as mine, so they were ambulatory and both were only affected on one side of their body. Therefore, they both walked slowly, with a pronounced limp, and had trouble using one of their arms. One of the girls wanted to call her parents to tell them we had arrived safely. These were the days before cell phones, and I assisted her in dialing the phone number. Then she went to take a shower and she was in the bathroom for a very long time.

The next morning the team had breakfast together. The coffee shop in the motel had a breakfast special. You know the type. Eggs any way you want them, hashbrowns, bacon or sausage and toast. The coaches suggested that is what we all order. Most of us were good with that. Except one of the star athletes. He just wanted some buttered toast. He never ate much in the morning.

The whole day was filled with sports events. Track and field. Weightlifting. Bocci. Wheelchair soccer. Since we all were affected by cerebral palsy, each athlete participated in various events that matched their level of ability. Whenever it was possible, we watched each other and cheered each other on. Some of us were very loud. Some showed their support more quietly.

After two days of intense competition, most of us were ready for a break. The dance on the second night was a good time. Since it was a regional competition I met people there from other parts of Texas and several other states. One of the things that made the dance fun was that we all danced to the best of our ability, and did so with gusto.  Nobody criticized what we couldn’t do. There was one person with us who did not attend the dance that night. He had pushed himself so hard in the previous two days that he stayed in his motel room with several ice packs all over his body.

On the way home the next day, a wonderful thought occurred to me. Yes, we all had cerebral palsy, and that meant there were some things we couldn’t do in the same manner as some people might. However, disability or not, we all did some common things as well.

Who doesn’t know a girl (or maybe several) who takes too long in the bathroom?

Who doesn’t know someone who likes to sing along with ’80’s music?

Who doesn’t know someone who doesn’t like to eat much in the morning?

Who doesn’t know people who are extremely vocal in supporting their friends while also knowing others who show their support more quietly?

Who doesn’t know someone who pushes themselves so hard physically that it gets to the point that they have to cancel their plans so that they can recover?

And who doesn’t know someone who dances in ways that some would consider unconventional?

Being part of that sports team in high school is one of the experiences that taught me to focus more on my abilities than anything else. And in trying to do that, I have discovered in the ways that matter, we are all more the same than different. I do many things that people without disabilities do also.  Go figure.

On this particular issue, Maya Angelou and I are certainly on the same page.

Posted in Accommodations, cerebral palsy, dance, Disabilitiy, inclusion, kids with disabilities, Sports | Tagged , , , | Leave a comment

“Pop Quizzes”

pop quizOn this blog, I have always tried to be pretty transparent about the fact that I have a psychiatric diagnosis as well as my physical one. And in the same way that my cerebral palsy affects me in a million little ways every day, my psychiatric diagnosis affects me more than my physical one ever will.

Why is that?

I don’t know if I can explain it completely in a way that it will be understood, but there are only certain ways my physical disability affects my life, whereas my psychiatric diagnosis can affect almost everything I do. In particular ways, it affects every interaction that I have and most of the thoughts in my head. My psych diagnosis is hard to get away from. But there are plenty of times I can easily forget that I use a wheelchair as a way to get from point A to point B. Using the skills and strategies that I have learned in order to manage my symptoms is something I work at diligently.

One of the ways my psych diagnosis manifests itself in my life is that I have many triggers. That is, a sound or a smell or the way somebody says something can instantly pull me back into a bad memory with such intensity that it is like I am experiencing that situation for the first time. Even if it is completely unintentional, a trigger can mess with both my body and my mind, and depending on the situation, it can continue in ways that make it feel endless. Nothing like that is ever fun to experience, so I try my best to let the people close to me know what my primary triggers are and what they can do to be supportive as they come up in my life. And I know that is necessary, in much the same way that people around me most need to know the best way to help me in and out of a car.

The thing is, I’ve never liked the word. To me, “trigger” is always going to be the thing you pull to shoot a gun. The negative connotation has never set well in my head. It may seem like a small thing, but when I talk to people about what my “triggers” are, it automatically feels to me like something other people should be scared of. My reality is that does not have to be the case As long as my triggers are managed correctly, they don’t have to be a big deal.  Since there is such a stigma around mental illness in society as it is, the word just feels to me like one more thing that adds to the misconceptions.

This morning I went to see a new counselor and after a while, the conversation got around to the word “trigger.” I have never thought to tell anyone why it leaves a bad taste in my mouth; I don’t think about the reasons often. I only use it routinely because it is the word for the concept that most people know.

This new counselor said that she had just recently decided to stop using the word “trigger” for some of the same reasons that I don’t happen to like it. When I asked her what she used instead, she gave me several examples. She talked about people experiencing “reminders” or something “sparking” a memory deep inside that needs to be explored.

Then she got to my favorite answer. She told me that she had gotten into the habit of calling triggers “pop quizzes.” She explained that  “a pop quiz is usually unexpected, and it is a check in to see what a student knows. So, if you don’t respond well to a pop quiz, you know that you might have some work to do and digging a little deeper might be necessary.”

What a concept. I love it.

I have pretty much come to terms with the fact that my life is never going to be a fairytale. I won’t ever simply wave a magic wand that evaporates all my problems into a fine mist that feels good on my face as it rains down on me (although that would be nice to try for a week or so, but after that, it would probably get a bit stale.)

I’m always going to need caregivers. I will probably never be able to drive. And there will always be many situations that I have to manage in order to make my life work. I am okay with all of that.

I’m going to continue to make sure I do whatever I need to do to make myself as strong as I can emotionally.

Whenever the next “pop quiz” comes, I want to make sure I am as prepared as I can be.

Posted in cerebral palsy, Disabilitiy, Mental Illness, Psychiatric Diagnosis, Wheelchair | Tagged , , , | 1 Comment

The Morphine Made Me

morphine-made-meIf I had to come up with the main thing my disability has taught me, I would have to say it is how to be resourceful.  A mirror is tilted above my stove so I can see if a pot of water is boiling without having to stand up and lean on a hot surface.  There are shoelaces tied to every doorknob in my house so that I can easily reach back and close the door behind me.  Gradual ramps cover every threshold so that I don’t feel a significant bump and risk losing my balance every time I enter or exit my house.

Those are some of the physical things.  What I am prouder of is my ability to look outside the box to get things done.

2007 was an interesting year for me.  I had the honor of being crowned Ms. Wheelchair Kansas, and that title enabled me to travel the state and speak to various groups about disability issues.  It was a great time.  Phenomenal people happened to be everywhere I went, and using my voice to speak for empowerment was an experience I wouldn’t trade for the world.  There was only one thing I personally really wanted to do that year.  The coolest thing that I could think of was to have a one on one meeting with then-governor Kathleen Sebelius.  As Ms. Wheelchair Kansas, I thought that kind of meeting would be better than velcro shoes.

But something else was going on with me in 2007 as well.  I was plagued with health problems.  Severe unexplained pain dominated my days frequently, and countless tests could not determine the cause.  As the months went by my symptoms got worse.  I was hospitalized often and increasingly frustrated what seemed like all the time.

Part of the reason for my frustration was that I knew I only had my crown and my title for a year. It’s a one-time thing.  Once a wheelchair user is crowned, she can never be so again, even in another state.  That meant there was limited time to advocate and share the message and information that I wanted to.  Being sick just was not part of the plan.  My body had other ideas.  Towards the end of my reign, it was decided that I needed exploratory surgery, in order to get to the bottom of what was going wrong.

My surgeon, Dr. Mark Praeger, was a kind and gentle man who offered to, in his words, “go into my belly and take a look around.”  Before surgery, he made himself available numerous times for my questions.  He also personally guided me through all the preparation for the procedure.  He is a really nice guy.  He also happens to be married to the woman who was the Kansas Insurance Commissioner at the time.

Surgery went well and the next day a whole lot of morphine had me sufficiently chill.  Dr. Praeger casually came into my room and asked me if I needed anything.  I saw my opportunity and in my drug induced state, I decided to go for all the marbles.

“As a matter of fact, Dr. Praeger, since you are asking, there is something I need.  You see I have been Ms. Wheelchair Kansas for about nine months now, and I would love to meet the governor before my reign is over.  Could you maybe talk to your wife and see if she might be able to help set up a meeting like that for me?”

His laughter continued for no less than five minutes.  Then he said, “Gee, Lorraine.  The next time I ask one of my patients if they need something, I am going to have to clarify that I meant medically.  But let me see what I can do.”  He was still chuckling as he left the room.

The morphine worked its magic.  In more ways than one.  Two days later I had an invitation to the Governor’s office.  And about a week after that, I was able to personally thank Kathleen Sebelius for her ongoing support of people with disabilities and her commitment to those of us with disabilities living in our communities instead of nursing homes.  Having that conversation was one of the best things I have ever done.

Who knew that the health problems I had in 2007 would lead me to a personal meeting with the governor?

When I tell that story these days, I usually end it with “the morphine made me do it.”  I just don’t think I would have had the courage to ask Dr. Praeger for the favor if I had been stone cold sober.

When I saw him at the hospital recently, he smiled big and said, “How is Ms. Wheelchair Kansas?”

I returned his greeting with a grin and we made small talk for a minute.  As I rolled away I could not help but think about how proud I am that I have learned to use all my resources.

Posted in Advocacy, Disabilitiy, Good Memories, Health, Laughter,, medical emergencies | Tagged , , | Leave a comment

Not the Sidelines

not-the-sidelinesIt is a lesson I learned when I was about fourteen years old. About halfway through my freshman year in high school, I started going to the varsity basketball games. Some friends of mine were on the team and I liked to attend so that I could cheer them on. Up until that point, I didn’t have many expectations. Sitting on the sidelines while my peers participated was just par for the course. Hide and go seek isn’t really a good time when your wheelchair is bigger than everything that can conceal your presence. And kickball at recess isn’t really an option when your body doesn’t balance well. So I was used to holding coats and backpacks when other kids played.

Then one day after I had been going to the games for a while, the head basketball coach came and asked me a question. “Hey, Lorraine. I have seen you at games on a pretty regular basis. I’m wondering if you might want to help out and be our manager. You can keep track of some of our stats. Does that sound good to you?”

Was he kidding? All I wanted to know was where I needed to sign.

For the next three years, I went to every game. I got to know most of the players and their goals, keeping track of their progress in achieving them. I even got a varsity letter every year. Being basketball manager helped me out socially in many ways. But as I look back, I know it did something much more important as well. Having something to do for the team made me feel like I was I was part of it. And I found participating much more rewarding than sitting on the sidelines.

In 1994 I moved to Lawrence for my first job out of graduate school. It was at a Center for Independent Living where it was my job to help people with disabilities learn skills that they choose to increase their independence. So I would go to the grocery store with people and assist in navigating the aisles. We would sit down and practice developing a budget and strategies to stick to it. I brainstormed with some consumers about how they could find reliable and trustworthy caregivers. That last one is something I still do for myself today.

But perhaps the most important skill that I learned in my first job was how to advocate. It wasn’t until I worked at that agency that I understood that I not only really had a voice, but if I used it correctly people would listen. That didn’t mean I was always going to get what I wanted, but I also learned that what I wanted was never going to happen if I didn’t ask.

In the mid-1990’s Lawrence didn’t have an accessible public transportation system. Since I don’t drive and could greatly benefit from accessible public transportation in this town, some of my coworkers encouraged me to write a petition and leave it at the front desk of our agency for several weeks. I did so. After that, I went to a city commission meeting and told my story about what the lack of accessible public transportation in my community meant in my life. It was the first time I had given my testimony to the Lawrence City Commission. My voice shook uncontrollably and for a while there I thought I might pass out. But I did it. And I turned in the petition that had several hundred signatures on it. We didn’t get an accessible transportation system that year. It came a few years later. The people who could benefit kept talking about it. And we didn’t go away. These days I am friends with most of the city commissioners on Facebook. Talking to them has gotten easier through the years. And now they all know who I am. Go figure.

A few days ago I heard about a bill that was introduced in the Kansas Senate that had the potential to significantly impact my life in a negative way. It was terrifying. The Medicaid funding that pays my caregivers was in jeopardy of being deeply cut. Immediately I emailed the state senators who represent my community and urged them not to vote for the bill, as I explained my story. Both of them responded to me personally. That was just cool. The bill didn’t pass and I have heard from fellow advocates that things are okay for the time being, but these issues are not going to go away. At least not very easily.

So I plan to continue to use my voice to advocate for my quality of life and for those in similar situations.

Because I have found participating much more rewarding than sitting on the sidelines.

Posted in Advocacy, caregivers, Disabilitiy, Facing a fear, Government benefits, Government Programs, inclusion, Medicaid | Tagged , , | Leave a comment

There is a Difference

disability-empowermentI’ve heard that many people do lots of cleaning in the spring.  I, on the other hand, only clean my office when I can’t stand the clutter anymore.  Such was the case a few weeks ago.  As I was reorganizing some things on my shelves, I found a pile of old business cards.

It was interesting.  They listed my name and my education.  Everything was spelled correctly.  Pretty standard stuff.  It was the job title that made me pause.  Disability Awareness Specialist.

That would have been a perfectly fine description of what I do a few years ago.  These days not so much.  Today I would call myself a Disability Empowerment Specialist.

What is the difference between disability awareness and disability empowerment?

To me, disability awareness is just that.  Being aware that there are people with disabilities in society and some use certain accommodations.  Accessible parking and bigger bathrooms for wheelchair users. Some people who are deaf use sign language to communicate or maybe they utilize the services of a sign language interpreter.  Some people who are blind use a white cane to navigate their surroundings.  Awareness is in no way a bad thing.

Disability empowerment, on the other hand, goes a step further.  When someone is practicing disability empowerment, they might encounter a person who is deaf using an interpreter to communicate and ask how to say “hello” in sign language so they can begin to communicate with the person who is deaf on their own.

Someone who is practicing disability empowerment might also see someone who is blind and using a white cane and ask if they need any assistance.  If the answer is affirmative, and what is needed is communicated, then maybe offer to describe the room.  Maybe they would even offer their arm after a person who is blind asked for help getting where they needed to go.

We have come a long way in society when it comes to people with disabilities.  It is now pretty commonplace for a ramp to be at an entrance to a building and to have larger doorways and hallways throughout.  As a wheelchair user, I appreciate that.  And I always will.  Because I remember the time when the world was quite different.

These days, when I talk about inclusion, I am mostly talking about an attitude.  Does society truly want to include people with disabilities and treat us as equals?  If so, then most of society would do well to practice disability empowerment as often as possible.

My hope is that most people won’t settle for just being aware when it comes to how they interact with people with disabilities.  Instead, I want people to practice disability empowerment.

It looks like I may have to splurge on some new business cards.

Posted in Attitudes, Deaf, Disabilitiy, Helping people with disabilities, inclusion, Independence, Making people comfortable | Tagged , , | 1 Comment

Not Even A Prayer

not-even-a-prayerSince it hadn’t happened in a very long time, the whole thing shook me to my core.

Last Saturday I went to the Women’s March in Topeka. Andrea, a close friend of mine asked me to accompany her, kind of a spur of the moment thing. Enthusiastically I accepted. I needed to go. It felt good to be surrounded by people (both women and men) from all walks of life who were concerned about the same issues that I am.

It seemed that the theme for the day was solidarity. That we would all stand together as one group and fight for justice, equality and hope. We weren’t alone in our struggles. Other people understood them. There were all kinds of speakers. And I even saw a few people that I knew. It was a good time.

Towards the end of the event, that was when I noticed them. Two young men came up and said hello. They weren’t scary, and they started making conversation. What was my name? Why was I in a wheelchair? So your disability is progressive then? (It isn’t.) That is when they asked what they wanted. Can we pray for you?

I’m not inclined to deny anyone that request. Prayer is a nice thing that usually comes from a good place in people. I was not expecting what happened when I accepted.

These two men closed their eyes and laid their hands on me. They started praying that God would strengthen my bones and muscles and tendons so that I could rise up and walk. I was stunned. I couldn’t move. Couldn’t speak. Could barely breathe. And it only got worse.

After they finished praying for me, one of the young men actually asked me if I felt any different. When I said I didn’t, they prayed again. When it failed to work a second time, they walked away.

Sometimes I wish I were a little faster on my feet. (No pun intended.) About ten minutes after the encounter, I was able to come up with about 87 things that would have been appropriate to say. But as they were standing there disappointed that I wasn’t walking, all word and thought alluded me.

It is hard to describe what I was feeling in that moment. Sadness. Disappointment. Utterly misunderstood. Did they think my life, as it is, was not worth living? Did they think their prayer was going to “save” me? There is no way to know exactly what they were thinking, but I think it is safe to say that none of their assumptions about my life were positive.

The thing that struck me was that they were not preaching the gospel. If that had been what they wanted to do, they could have spoken to anyone in that crowd. Instead, they singled me out. Of all the people at that gathering, they made the assumption that I needed to be “healed.”  In this event that exuded solidarity, I was the one they focused on.

My friend Andrea, standing next to me through all of this, has known me for more than 20 years. After the two men prayed, she asked me if she could go tell the guys how offensive and demeaning what they had done had been to both her and me. I nodded. She took off. Her purpose was not to be mean in any way, she simply wanted to let them know how their actions had come across to us.

I’m not one to often speak about my faith. Although it is vitally important to me, I don’t like to push my beliefs on other people. I also don’t like the experience of having them do the same. It makes me really uncomfortable. Case in point? See above.

Here’s the thing. I believe in a God who can do anything. Therefore, if He wanted me to walk I would be walking. And since I am not walking, God must want me to be in the situation I am in. And I am okay with that. I will continue to be okay with that until God decides to do something different.

I also believe that only things that are broken need to be healed.  A strained relationship. Someone who is suffering.  A weary soul. My lack of balance and coordination simply doesn’t qualify.  At least not in my book.

John chapter 9 in the Bible talks about a blind man that the disciples brought to Jesus.

They asked Him “Who sinned Lord, this man or his parents, that he was born blind?”

Jesus answered them. “Neither one. This happened so that the work of God could be displayed in his life.”

Ahhhh.  I get it now.

I don’t know why I was born with a disability. It’s not something I spend a whole lot of time thinking about. I’ve always considered my cerebral palsy to be just one characteristic of the totality of who I am. And if God can show who He is through my disability, who am I to wish my circumstances were different?

The young men who prayed for me on Saturday thought they could make my life better by praying for me to walk. What they didn’t understand is that I don’t want to change anything. My life is pretty great the way it is. And my walking at this point is not my ultimate goal. Not by a long shot.

Not even a prayer.

Posted in Ableism, Attitudes, Disabilitiy, faith, Wheelchair | Tagged , , | 1 Comment