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

We. The People…

we-the-peopleWhen I was a junior in high school, my English teacher was pretty creative.  If we wanted to earn some extra credit, she encouraged us to go to plays put on by the drama department.  Sometimes writing stories would get us additional points on an assignment.  But my favorite way to earn more points was to memorize a selection of literature that she had picked out.  At times it was a passage from Shakespeare, once it was parts of the Declaration of Independence.  There was something about the memorizing that resonated with me.  It made what I was reading more real because it enabled me to think about what I was reading in a different way. And if I was able to repeat back to her what I had memorized, the meaning usually sank deeper within me, at least for a while.

Like most people in America, I have been thinking about politics often lately, because I just don’t know what a new administration is going to mean for my future.  As I have said before, I depend on many government programs in order to live my life to the best of my ability.  Programs funded by Medicaid enable me to live in the community with the support of caregivers instead of living in a nursing home.  Another state Medicaid program that I helped design allows me to work and pay taxes into the system without losing access to funding for caregivers.  The rules used to be much different.  We changed that.

Because I’ve had some anxiety about what the future may hold, one of the things I did a few days ago was to go back to the basics.  I needed some reassurance and reminding of what this country is about.  So I read the Declaration of Independence again.  And then I moved on to the Constitution.  The first three words of the preamble made me stop.

We the people.

It doesn’t say “We the men.”

It doesn’t say “We the Caucasians.”

It doesn’t say “We the Christians.”

It doesn’t say “We the heterosexuals.”

It doesn’t say “We without disabilities”

Let me focus on the last one of that list for a minute, because as a woman affected by a significant disability, my concerns start there.  In the past few years, Donald Trump has had numerous lawsuits filed against him for violations of the Americans with Disabilities Act with several of the properties he owns. He settles most of them, a few are still pending.  I am unsure, at the time that he settles, if he authorizes that those properties or the services that are provided to the public as part of them be brought up to federal accessibility codes.

He mocked a reporter with a disability (yes, I believe that he did that) and then suggested a few days later that the reporter needed to apologize to him.

And then there is the issue of his pick for the next Secretary of Education.  My jaw dropped as I watched some of the confirmation hearings.  Betsy Devos did not realize that the Individuals with Disabilities Education Act, (IDEA) which ensures children with a disability a free appropriate public education and was passed in 1975 was federal law. When Senator Maggie Hassan from New Hampshire talked about her son who has severe cerebral palsy, and who graduated from a public high school because IDEA was in place, Ms. DeVos said she “would be sensitive to those needs.”  What? Someone being sensitive to needs is not the same thing as them pledging to follow federal law.  In my opinion “we the people” is an important part of that law.  Kids with disabilities deserve nothing less than to be educated alongside their nondisabled peers.  Inclusion is a good thing for everyone. And kids, both those with disabilities and those without, happen to be the future of this country.

Both The Civil Rights Act of 1964 and the Americans with Disabilities Act of 1990 are also laws that ensure the “We the people” concept.  The playing field is level because we are all equal.

As of Friday afternoon, according to a story that I read in the Washington Post, the White House website had taken down all the web pages related to disability.  Not a good sign.  Especially because it was during the first few hours in office.  It might be for some legitimate reason, I do understand that.   The timing still makes me cringe. Read more about that here.  Somebody needs to get serious. And soon.

There have been times in the last several months that my anxiety about all this political stuff has been intense.  And on several occasions, close friends have encouraged me to take one day at a time, since nobody seems certain of what will happen next.  And I can see that logic.

Okay, Mr. Trump, I will give you a chance before I jump to any conclusions.  But know something about me and many other advocates and private citizens.

We will be watching.

We.  The people.

 

Posted in cerebral palsy, Disabilitiy, Diversity, kids with disabilities, Medicaid, Politics | Tagged , , , , | Leave a comment

Make Your Move…

I had to think about it.  For a while.

Since I don’t have cable, I didn’t watch the Golden Globe awards in real time last Sunday night.  But several of my friends sent me the video of Meryl Steep’s speech and asked me my opinion.  And after a few days of watching the video several times and reading some blog posts by other people with disabilities, I can honestly say I have mixed emotions.

On one hand, I applaud Meryl Streep for bringing back into mainstream news that our president-elect mocked a reporter with a disability.  The act was despicable and demeaning and I am never going to be convinced it didn’t happen (no matter how many of his supporters send me a copy of the one story to the contrary.) As a person affected by significant disability, I never want the story to fade or be forgotten.meryl-streep

This is what Ms. Streep said:

“An actor’s only job is to enter the lives of people who are different from us and let you feel what that feels like, and there were many, many, many powerful performances this year that did exactly that, breathtaking, compassionate work.

But there was one performance this year that stunned me. It sank its hook in my heart not because it was good. It was — there was nothing good about it, but it was effective, and it did its job. It made its intended audience laugh and show their teeth. It was that moment when the person asking to sit in the most respected seat in our country imitated a disabled reporter, someone he outranked in privilege, power, and the capacity to fight back.

It kind of broke my heart, and I saw it, and I still can’t get it out of my head because it wasn’t in a movie. It was real life. And this instinct to humiliate when it’s modeled by someone in the public platform by someone powerful, it filters down into everybody’s life because it kind of gives permission for other people to do the same thing.”

Ms. Streep starts out by saying “an actor’s only job is to enter the lives of people who are different from us and let you (the audience) feel what we feel.”  To me, what she is describing is empathy.  And I always think empathy is a good thing.  I had a professor when I was in graduate school who defined empathy as “your pain in my heart.”  I was still with her at that point.  Thought the message was nice.

And then, she went on to describe the reporter that our next president mocked as a “disabled reporter, someone he outranked in privilege, power, and the capacity to fight back.”

When Ms. Streep said that line, the vibe that I got was one of pity.  And that is where she and I part company.

While it is true that we cannot all be billionaires, I would never describe Serge Kovaleski (the reporter that Trump made fun of) that way.  He is a Pulitzer prize-winning journalist who works for the New York Times, and who has worked previously at the Washington Post and the New York Daily News.

He couldn’t fight back?  Really?  He is a journalist.  He could have written anything he wanted about the incident.  And that makes him powerful as well.  More powerful than many people who get mocked in society.  He could have written about how being mocked made him feel.  And most of the world would have been interested.  He chose to remain quiet about the event itself, only saying repeatedly that Donald Trump’s comments about a story that Kovaleski had written fifteen years prior were not true.  He had every right to fight back.  He chose not to do so.  That tells me only that he has a whole lot of class.

I have a problem when others speak about people with disabilities in the context of pity.  I hate it.  With a passion.  In my experience, pity paralyzes.  Pity invites people to stay stuck.  Pity emphasizes the gap between “us” and “them.”    As long as there is pity in the world, people with disabilities are never going to be seen as equals.  I have never known pity to do anyone any good, either the sender or the receiver.

Instead, as Ms. Streep first suggested, I encourage all the people in society (not just actors) to enter the lives of people who are different…and feel what we feel.” But that is only the first step, the launching pad.  Don’t stop there.  If anyone feels anything negative about my circumstances, what I would want most is for them to take action.

I try never to pity myself (although some days I must confess I have my moments.)  Pity makes me feel like Tiny Tim, and not in a good way.  Instead, my hope is that people around me feel what I feel and that those feelings cause them to start moving.  Because it is only positive movement that is going to make my life better.

Do you feel my frustration about having to search for quality caregivers on an almost continuous basis?  I would love it if some friends would volunteer to share the flyer advertising the job on their Facebook page.  Or maybe assist me in developing a list of people who might be willing to help out in a pinch.

Does it resonate with you sometimes that I don’t drive and cannot leave my house much without the help of a caregiver, and therefore my social life is somewhat limited?  Let’s set up a time to visit or have lunch together.  Do you Skype? Or can you call me at a time when you have a free few minutes?

Is it hard for you to imagine not being able to run to Walmart at a moment’s notice when you run out of something you need?  Every once in a while, I would sincerely appreciate you touching base with me and asking if I need something next time you make that trip.

Do you feel strongly that I should be able to live in my own home, with the support of caregivers, instead of living in a nursing home within the next few years?  Then stand with me and speak out against the Medicare and Medicaid budget cuts that this new administration is proposing.

All of those things move me away from a place of pity and help me to feel connected to my community.  And that is my ultimate goal.

So anytime anyone looks at an aspect of my life and is inclined to feel some pity, this is what I want to tell them.

Make your move.

 

 

 

 

Posted in Ableism, Advocacy, America, communicating respect, compassion, Disabilitiy, Helping people with disabilities, how to help, inclusion, negative perceptions | Tagged , , , | 4 Comments

My Intention

wayne-dyer-intentionA few years ago, I was introduced to the concept of mindfulness. I really liked it. The idea of being fully present in every moment, and using our thoughts, senses, and experiences to appreciate every minute that we can. Practicing mindfulness has helped me in many ways. It turns out that when I am fully present in any given moment, my thoughts don’t race as much. I don’t get overwhelmed or fearful, at least not as easily.
Also, I have found, the more I practice mindfulness the more things I have to be grateful for at the end of the day. A difficult conversation went better than I expected. The flowers in the park were exceptionally pretty as we drove by. I got seen for a medical appointment quickly instead of having to spend a long time in the waiting room. A cute kid at Target responded with a huge smile and a belly laugh when I said hello. A particular food that I have been craving was absolutely delicious at lunchtime.
Good things are easier to find when you make a point to look for them. Mindfulness has been a good strategy for me.
Another idea that I discovered a few years ago came from bestselling author Debbie Macomber. For more than 20 years, Ms. Macomber has picked a word at the beginning of each year. Call it a theme maybe, or simply something she wants to put some energy into. But she starts thinking about it around Christmas, and then, after some thought, she picks her word for the year. Some time back, I decided to give it a try.
In years’ past, some of my words have been “peace,” “believe,” and “real.” As all of those words melted into my soul, they each helped me to take a step closer to who I wanted to be. Once I pick a word, it has been amazing to see how it manifests itself in my life. For example, when “peace” was the word I was concentrating on, I had one of my caregivers write it in big letters on an index card for me, and then I had that card laminated and I put it in my purse. That meant I saw it several times a day.
On numerous occasions that year when I felt myself getting angry or upset or flustered, an image of the index card would flash in my head. As I concentrated on peace, I could usually feel a sense of calm flood through me. It happened more and more frequently as the year progressed. These days I can usually get to peace pretty quickly.
The word for 2017 took some thought. There has been a whole lot going on in my life lately. Some of it is chaos and some of it is profoundly cool. Because of both, I wanted this word to be solid and secure in my head. While trying to come up with the perfect choice, I asked myself some challenging questions.
What do I want to attract this year? What do I want to let go? What goals am I working for? What kind of life do I want to create? What kind of people do I want around me? How do I want to feel at the end of each day?
I was clear about one thing. I want to continue to practice mindfulness as much as I can. To notice the details. To tune into emotions that people around me are feeling as well as my own. I want to raise my awareness.
As all of those thoughts were swirling in my head, the word came to me. Intention. As much as I want to be mindful, I want to live each moment with intention. What can I offer? How can I listen? Can my knowledge bring something to the table in any given situation? How do I want to serve others? How can I make sure that people leave an interaction with me feeling positive and feeling empowered? What good things can I do inside myself to make sure that I can give good to others?

Some of those questions will only be answered with time, but I know that I want to live a life full of love and joy, and I want all my actions this year to reflect that.
Hopefully, in the months ahead, I will have a book out. The first draft is complete.  It was important to me to share my experiences with people who will find them useful. My target audience, at least at first, is college students who are going into helping professions, and those who work with people with disabilities.
My hope is that If I can teach the people in my target audience specific ways to focus on abilities as opposed to disabilities, then a large group of kids and adults will end up feeling empowered, and other people will feel empowered in the process.
At least that is my intention.

Posted in Disabilitiy, disability etiquette, empowering language, Helping people with disabilities, inclusion, Journey, people with disabilities | Tagged , | Leave a comment

“Simply Happy”

simply-happy-amy-newmarkThere are lots of quirks in my life. Things I happen to do a little differently than most other people. One of them happens to involve my day to day schedule. Since most of my caregivers are college students, the majority of my life tends to revolve around the academic year. Not a bad thing. There is just an aspect of me that has never quite left my college days.

Between semesters, I usually have less access to caregivers because most of the people I employ spend their time off from classes catching up with their families. That is the way it should be. For me, fewer caregivers mean not as many events or appointments for several weeks. Just like my Christmas breaks back when I was a student myself.

I have used some of the down times I have had recently to do something I have been wanting to do for months. Amy Newmark, the editor-in-chief and publisher of the Chicken Soup for the Soul books recently wrote her first book. It is titled “Simply Happy: A Crash Course in Chicken Soup for the Soul Advice and Widom.”

Her marketing plan was nothing short of brilliant, in my opinion. To my recollection, she didn’t hire an expensive marketing firm to get the word out about her new book. Instead, she reached out to the Chicken Soup for the Soul contributors, anyone who has had a story accepted in a Chicken Soup for the Soul book and asked them to write a review of it on their website or blog or in a podcast. I jumped at the chance.

Anyone who knows me well knows that I have loved Chicken Soup for the Soul since Jack Canfield and Mark Victor Hansen came out with the first book in 1994, long before some of my stories were ever published in later books. The concept has always settled well, deep within me. Stories that make you feel better and brighten your day a little. In this book, Ms. Newmark uses many stories from numerous “Chicken Soup” contributors to exemplify how her suggestions on how people might increase their happiness can be put into practice.

Some of Ms. Newmark’s suggestions are very practical, like what you can literally do in a spare minute of your day to clear some clutter and stop procrastinating (empty the top rack of the dishwasher or put away the suitcase from your trip last weekend.)

I may be paraphrasing here a bit, but she also says that making a habit of smiling at everyone makes the world a much kinder and gentler place. Along the same line, she talks about everyone having one or two “frenemys” that is, friends who are actually enemies, and how important it is to get those toxic people who drain you of resources out of your life.

There are all kinds of nuggets of wisdom like that throughout the book; some simple steps and some suggestions for changes in attitude or perception. All designed to put a little more joy in your life, and keep it there.

Perhaps the one I liked the best was a very simple concept that has been very difficult for me to do at various times. Expect good things to happen.

2016 has had more than its share of challenges. Don’t get me wrong, I would be the first to tell you that lots of good things have happened as well, but I have lost friends, struggled with caregivers, and been generally frustrated over more than a few situations this past year as well as being concerned about my future. On days when it all seems to get the best of me, I have been known to let myself give in to the negativity for a while. But that is where I stop. And I continue with what I have to do in a day when I am only back in “neutral.”

If I did my best to “expect the best” in every situation I am concerned about, literally having the mindset that good things are GOING TO HAPPEN all the time, then I bet a whole lot of my stress would dissipate. That is an interesting concept, isn’t it? I wonder how long it will take to make thinking positive instead of thinking negative an automatic habit? And how might my life change once I do that?

I think I might be ready to find out.

So, welcome 2017, I have some big plans for you. I know I want to do several things in my life differently.

But mostly I just want to be “Simply Happy.”

Posted in Attitudes, changing perspectives, Disabilitiy, Lessons, overcoming challenges | Tagged , , , , | Leave a comment