In My Own Home.

It’s time for me to share a story.  No, this one doesn’t have handsome princes or fairy godmothers waving magic wands.  Although I wish it did.  That would be so much easier.

This is my Medicaid story, and I want to share it in order to put a human face behind the debates.  One of the so many faces that would be negatively affected by the health care bill that the Senate is about to vote on.  I can only pray it doesn’t pass.

I applied for Medicaid in the summer of 1991.  I was still in college and about to be ineligible to be on my dad’s health insurance.  When I applied, I had the same philosophy I did when I was applying for Supplemental Security Income. (SSI) “This is just for now, I told myself, “because it isn’t possible for me to get a part-time job at McDonald’s for extra money like most of my friends were doing.  When I get a full-time job, I will get on a group insurance plan (because I was uninsurable otherwise) and I won’t need this extra help.  I won’t need SSI at that point anymore either.  This situation is completely temporary.  When I get a job, I will pay taxes back into the system that provided me so much support.”19490299_10154722148748806_1219819654_o  That was the plan…

Life got in the way.

I had a surgery that was done incorrectly, and many subsequent surgeries to fix the damage that was done by the first one.  I was in a car wreck on the way home from work one day.  The paratransit driver did not strap my wheelchair into the floor of the bus correctly.  When he hit the brakes, I hit the floor and my wheelchair landed on top of me.  I ended up with a permanent soft tissue injury in my back.  It is difficult for me to sit in my wheelchair for long periods of time.  Along the way, I lost my job.  Then an accident in my kitchen resulted in serious burns to my left leg requiring dressing changes every day for several months.

Medicaid paid for it all.

I have never been lazy or glad that I am “living off the government.”  Believe me, if it were physically possible for me to work 40 hours per week with some overtime thrown in, I would happily do so in a heartbeat.  I would love to support myself without help from anyone.  If only.

I don’t know where I would be without Medicaid coverage.

These days, in addition to some medication and my hospital bills (I had surgery to remove some pesky and painful kidney stones a few weeks back) Medicaid pays the salary of my caregivers and having caregiver support is what enables me to live in my own home and be a part of my community.  Without that support, I could very easily be living in a nursing home.  In that scenario, I could not work at the job I love or have my service dog, Leah, who can only be accurately described as part of my family.

I wasn’t born prematurely on purpose.  Although I embrace my cerebral palsy, it wasn’t my choice.  Nobody should fear living in a nursing home because a disability that has affected them since birth prevents them from driving and putting on their own shoes.

Do you want my story to have a good ending?  Please call your senators and ask them to vote “No” on this health care bill.

I want to live happily ever after.

In my own home.

 

Posted in Advocacy, America, compassion, Disabilitiy, Government benefits, Government Programs, Helping people with disabilities, inclusion, McDonalds, Medicaid, service dogs | Tagged | Leave a comment

This Is My Truth…

truthIt was a promise that I made a long time ago, and even if it is uncomfortable sometimes and might go against my grain, it is a promise that I intend to keep.

July 28th, 2007 was a good day for me. I had spent the previous week at the Ms. Wheelchair America pageant and met incredible women of power, all of whom were wheelchair mobile. That night was the crowning ceremony, and although I was not among the top five finalists chosen to become the next Ms. Wheelchair America, I had received a special award that evening, one that had never been given out before in the pageant’s 35-year history. I was proud of all I had accomplished that week.

I was breathing easier because the competition was over and enjoying some dinner when the head judge came over to my table. Matt and I had connected during my judging sessions and I liked he and his wife Tracey (another judge) immensely.

When Matt sat down, he asked if I could make him a promise. Since he and I had only known each other a few days, I was intrigued. “What’s up, Matt?”

“Lorraine, please keep being honest. Keep telling the truth, no matter how hard it is.” It’s not really in my nature to do anything else, so it was easy to respond affirmatively. Although I will never know, I got the vibe from Matt that answering some of the judges’ questions honestly instead of giving the answers they wanted might have hurt my scores in the MWA competition.

I don’t usually like to vent in public. I need to do so today.

As most people know, I utilize the assistance of a team of caregivers in order to live my best life possible. My caregivers are paid through Medicaid funds, and in Kansas, there are several programs that a person with a disability can be on to get the caregiver hours they require paid for by the state. The one that works the best for me is called Working Healthy. On this particular program, I can get more hours covered than on the other programs and I also pay a cheaper premium than I would otherwise. One of the criteria to be on this program is that the person with the disability has to be employed. I have always seen this program as a win-win for everyone involved. I get all the caregiver hours that I need and I pay taxes into the system that provides me with so much support.

I have chosen to self-direct my services which means that it is up to me to recruit, interview, hire, train and manage everyone who works for me. That has always been a whole lot of work, but I took on the responsibility willingly because doing so meant that I could hire the caregivers I was the most comfortable working with. I am okay with the fact that I am so dependent on other people to meet my needs. That situation simply is what it is. Because I am a 48-year-old woman and my caregivers come into my home to help me with the most intimate things that I do, it needs to be my choice who I am vulnerable in front of. That is the only way I get to maintain my dignity. Otherwise, I might as well be living in a nursing home.

As I have mentioned on this blog before, three months ago, I was told that there was a new rule for people with disabilities who hired caregivers. Background checks of the caregivers have to come back before the caregiver can start working. That process takes about three weeks. In real life terms for me, that means that I have hired several caregivers in the last three months that have been ready and willing to work for me and have been prevented from doing so because of this rule. While we have waited for the background checks to come back, I have been extremely shorthanded, and on more than one occasion, have attempted to do things on my own when a caregiver was not here. When I try to get myself in and out of the shower without support, there is a very real chance that I could fall and break a hip. And the issue is not that I don’t have caregivers available, it is simply that the state will not let them work. So I and my caregiver have done everything we are supposed to do, and a state policy prevents me from being safe.

Numerous times I have tried to talk to people who work for the state about this issue and been patronized and dismissed every time. The call it simply an inconvenience.  They don’t want to hear it is more like my worst nightmare.  They say it is for my safety. Not giving me access to the caregivers I hire is much more unsafe in my world. The people who make the rules think it is an acceptable solution that I use agencies instead of hiring my own caregivers. But I don’t want strangers coming into my house helping me with personal things when I had no say in hiring them. Agencies work for many people, but my 31 years of managing caregivers have taught me that there is not a one size fits all solution to having my needs met. More detail about that here.

The thing that I don’t understand is this. I must have a job to qualify for the program I am on that pays my caregivers. If the state knows I am smart enough to hold a job, why don’t they think I am smart enough to trust my gut and my experience when it comes to managing the caregivers I hire?

I guess I am a vulnerable adult because of my disability. That shouldn’t mean I need to be treated like a child and have “big brother” watching because I can’t keep myself safe. The whole situation is so demeaning to me. I just don’t think it is right to take away somebody’s dignity and choice in the name of keeping them safe. Especially when it is an incorrect assumption that I cannot do that for myself.

My disability does not make me incapable.

Usually, I don’t vent in public. I made a promise to Matt a long time ago.

This is my truth.

 

Posted in Ableism, caregivers, choices, Disabilitiy, Government Programs, Medicaid, Ms. Wheelchair America pageant, negative perceptions | Tagged , , , , , | Leave a comment

“Try”

It’s a subject I have thought about often.  A few months ago, I even wrote a blog post about the whole thing.  To say I am not a fan of the word “inspirational” as it relates to people with disabilities is like saying a glacier is a small piece of ice.  So, for the most part, I have taken the word out of my vocabulary.  People are not inspirational simply because of their disabilities.  The fact that I work a job that I enjoy or can make myself a sandwich is not inspirational.  I simply live the life I was given to the best of my ability.

When people call me “inspirational” for something specific I have done, on the other hand, I consider it a compliment.  When Brandon and I perform a wheelchair ballroom dance routine and people are emotionally moved in the process, we have done what we set out to do.  When someone compliments me on a piece of my writing that they read, I feel good.  The difference is that I know how much practice has gone into our dance routines and I know how many rewrites I go through to communicate exactly what I want to say.  The dancing and writing I do are things that make me uniquely who I am, and if those things inspire people I think it is great.

It feels awkward when a stranger comes up to me and calls me inspirational because they see me out in public.  They don’t know me and couldn’t possibly know if I am inspirational.

Taking the personal out of the equation, often I have been witness to people in public being inspired by someone simply because they have a disability.  And that makes me uncomfortable.  Because usually, it means that they have not taken the time to get to know the individual with the disability personally.  And sometimes, calling someone inspirational has a vibe of pity around it.

Therefore, I was a bit apprehensive in the minute before I watched Mandy Harvey, who was a contestant on America’s Got Talent recently.  The video was labeled “the deaf singer” and I held my breath.  Then, as I watched, I was absolutely blown away.

(The following information is from a YouTube video.)

“Growing up, the only thing I wanted to do was sing.  I ended up going to school for vocal music education so that could be my life.  When I was in college, I thought I had an ear infection.  It just got worse and worse and by Christmas, I was legally deaf in both ears.

There was one day when the teacher was going to play the piano and I was supposed to chart out everything he was playing.  And I had my pencil ready, and everybody else’s pencil’s started moving and I [was] just waiting for the test to start, and then one by one every person got up and left the room and I didn’t hear enough to even start the test.

That was a bad day.  Everything I had ever wanted was going away and I couldn’t stop it.

I left singing after I lost my hearing, and then I slowly figured out how to get back into singing with muscle memory, visual tuners and trusting my pitch.

One day my dad suggested that we play a song and I said “Well, that’s crazy, but I had a guitar tuner and I hummed the starting note and I just went for it.

Music now isn’t about the sound, it’s about the feeling.”

Ms. Harvey can hardly hear herself sing, and she sings with her shoes off so that she can feel the tempo or the beat of the music through the floor.

What she has accomplished might be the equivalent of my figuring out how to complete an Iron Man using my cerebral palsy affected legs.  It’s nothing short of incredible.

For the competition, Ms. Harvey sang a song that she wrote herself called “Try.”  The lyrics are below.

 

Try

 

I don’t feel the way I used to

The sky is gray much more than it is blue

But I know one day I’ll get through

And I’ll take my place again

If I would try (2x)

There is no one for me to blame

Cause I know the only thing in my way…is me

I don’t live the way I want to

That whole picture never came into view

But I am tired of getting used to…the day

So, I will try (2x)

If I would try (2x)

Ms. Harvey got the golden buzzer for her performance, which means that it was so good that she is going directly to the finals in the live show.  It was well-deserved.

Simon Cowell told her “I’ve done this show for a long time.  That (performance) was one of the most amazing things I have ever seen and heard.  It was incredible.”

For the most part, I have taken the word inspirational out of my vocabulary.  There are exceptions to every rule.  The video follows.  If you are not inspired by Ms. Harvey’s performance, I have a gentle suggestion.

Try.

 

 

 

 

Posted in can do, Deaf, Disabilitiy, Hard of Hearing, negative perceptions, Sign Language | Tagged , , , , | Leave a comment

Does It Matter?

Does-It-Really-Matter.001 (1)Most people close to me know that in the last few months I have been working on my first book. It has been a true labor of love because the information within it is what I am sincerely passionate about. This journey has been full of frustration, laughter, tears and even a moment or two of wondering if it is all worth it.

More doubts have crept in as well. Will people understand what I am trying to say? Will they take me seriously? Will other people with disabilities think I have no clue what I am talking about? The answers to all of those questions might not be ones I want to hear. It has taken me awhile to understand that this is my book. It is full of my ideas and opinions as a person who has lived with various disabling conditions all my life. That is all it is.

One of the best things about writing this book has been the feedback I have gotten from other people. Turns out that things that make perfect sense in my head can be confusing when other people read them on paper. Or something that I considered to be a complete thought turns out not to be.

One such issue was pointed out to me recently. My friend and former co-worker, Terry, graciously accepted my request to read a draft. One of the things I say pretty early is that I believe everyone has a disability. Some are seen and others are invisible. Some are a minor hindrance and some are more severe. When Terry read those paragraphs in the book, his comment was something like this:

“You say that you believe everyone has a disability. What if nobody does? I am more inclined to believe the title of this book, “More the Same than Different” if there was the premise that nobody has a “disability” and we were all equal.”

Isn’t that an interesting idea? It is not a concept I’ve ever considered before.

I’ve had a friend tell me in the past that her “disability” was that she was painfully shy. She knew it didn’t fit the definition of disability in the traditional sense. She was not going to qualify for disability payments from the government because she felt nauseous when she was around strangers. But her shyness disrupted her life to the point that it caused her to miss out on things that she wanted to do. She considered it a disability. Does it matter if anybody else did?

And what about a guy I saw featured on Ellen a few months back. He loved to ski and was paralyzed when he ran into a tree in a freak accident while going down a hill. He now uses a sip and puff feature on a power wheelchair for mobility. According to him, he simply navigates the world a little differently than he used to. And because he still has fun, his injury is not a big deal.

Does it matter that many people observing him would say he has a disability if he doesn’t happen to see it that way?

I have turned this issue over in my head from a number of angles in the last few days. And to me, nothing about it is as simple as it seems. I’m still fascinated.

Who gets to define disability? And what one person may consider a disability may not be a disability to someone else in the same circumstances. For some things, like qualifying for various needed benefits, society’s definition or perception of disability is important. In other cases, a personal definition of what is or is not a disability is the only thing that counts. It seems to me that, for the most part, it is all individual.

Do you have a disability? Does it matter?

 

Posted in changing perspectives, Disabilitiy, negative perceptions, people with disabilities, Philosophy, What some people don't think about | Tagged , | Leave a comment

Just Book It!

PBK11 Render

When I started my blog almost five years ago, I was because I wanted a way to articulate some of the things I was going through. Living with various diagnoses is challenging on the best of days, and can be frustrating and discouraging on the days that are not so good. Writing has always been incredibly therapeutic for me. I write down those things that are hard for me to say, and from the start, I was writing about things deep within my soul. I wasn’t even sure how much I wanted other people to know. In the beginning, I made sure kept it anonymous. My hope was that people would focus on my feelings more than my identity.

After a while it occurred to me that I wasn’t saying anything bad when I posted, I was simply raw and honest, and therefore, it was okay to share who I was. And so I did.
Sometimes I have used this blog to vent. Sometimes it has been a place to celebrate. Always it has been a place to share who I am. Eventually, this blog caught on. And my followers swelled to over 600. (Recently there has been a problem on WordPress and a few weeks back I lost almost 500 followers overnight. Nobody I know can figure out why…But I digress)

Over time I began to get feedback. The most common comment I have received from my readers is a message like this:

“Lorraine, I want to be respectful of people with disabilities; I just don’t know what to do. And because I don’t want to be offensive to anyone, I end up not doing anything.”

I get it. Really I do. When I am around certain people who I don’t have much experience with, I am awkward and uncomfortable. I also don’t want to do anything wrong. So I stay quiet and I usually try to get myself out of the situation as quickly as possible.

But here is the thing. One of my purposes in life, I believe, is to break down barriers between people with disabilities and those without disabilities. The awkwardness? The discomfort? I want it to fade away.

When I thought about how I might do my small part to make that happen…I wrote a book.

“More the Same than Different: A Practical Guide to Respect and Include People with Disabilities” is a book for people without disabilities about how to be more comfortable around people with disabilities.

Is it ever appropriate for someone without a disability to use the accessible stall in the bathroom?

What is “inspiration porn?”

If I am sitting next to a wheelchair user and everyone in the room stands up, should I remain seated?

Does Lorraine work with “caregivers” or “caretakers”? What is the difference?

What should someone do if he or she sees someone with a disability who looks like they might need some help?

Why is it so important to be sitting if you are having a serious conversation with a wheelchair user?

What are some disability “hacks?”

Is there appropriate use of language when interacting with people with disabilities?

What was it like being crowned Ms. Wheelchair Kansas 2007?

What is the one thing people can do to help you feel respected as a person with a disability?

What is the coolest accommodation Lorraine has ever heard of?

Why should disability issues like empowerment and inclusion be important to everyone in America?

What should someone do if their best friend just got diagnosed with a significant disability?

What is the best way to hug a wheelchair user?

Why is touch so important for people with disabilities?

How does Lorraine feel about getting assistance from various government programs?

What is an appropriate response if somebody’s grandmother just said something which is now considered offensive to people with disabilities?

What if someone has had a bad experience around people with disabilities in the past?

The book is going to be released sometime later this fall, and I could not be more excited about the way it is coming together. The cover design is amazing and several people are in the process of reading the book and making suggestions about how it can be even better. I just can’t wait to share it with the world.

If you want to know the answer to any of the questions above or if you simply want to learn more about some of the things that people with disabilities are affected by, I have a fabulous idea.

Just book it!

We are all more the same than different…

Posted in caregivers, cerebral palsy, changing perspectives, communicating respect, Disabilitiy, Disability Blogs, disability etiquette, disability humor, empowering language, Government Programs, Helping people with disabilities, inclusion, power of touch | Tagged , , , , | Leave a comment

I Don’t Kid Myself

im-not-a-kid-anymoreThe interaction took place several years ago and probably lasted less than a full minute, but it left an impression on me so intense that it is never far from my thoughts these days.

A former caregiver and I took a trip on a Saturday to a town about 45 minutes away from where I live. Her boyfriend came along just for kicks. Towards the end of the day, I remember thinking how much fun it had been to spend a few hours away from my typical routine and relax a bit. I’m not sure if I remember exactly what we did but I believe it involved a mall and a movie. We decided to stop for a bite to eat before heading home.

When we entered the restaurant, this caregiver and her boyfriend were behind me. As we approached the hostess in order to be seated, she looked over my head to my caregiver and said: “Do you need a children’s menu for her?”

It really happened. I swear.

After giving myself a few seconds to absorb the shock, I looked the young woman directly in the eyes and responded, “No, I’m pretty hungry, your typical menu will be just fine. Thanks.”

I know she did not have bad intentions, but I was shocked at the assumption she made. My disability affects my balance and coordination. That is the only reason I use a wheelchair. And my circumstances don’t mean I’m a kid.

Many years ago as a college student, I flew numerous times to visit my parents while I had a break from school. On one such occasion, because of weather and mechanical difficulties I had endured a long day of delays and missed flights. Because I am always the first one on a plane and the last one off, by the time I got to my final destination, exhaustion was in my bones and I was in no mood for small talk.

By the time my wheelchair got to me, the crew was the only people left from the flight.
The pilot graciously offered to push my wheelchair from the gate where we were to the baggage claim so that I could meet my family there. On the way, he tried to make conversation but seemed to miss that I was a 20 something adult.

He said, very loud and slow, “Do you like to fly on BIG planes?” It really happened. I swear.

I didn’t doubt his intentions in that scenario either. I know he was trying to be friendly.

The stress and frustration of the day had caught up with me. My response?

“Only when they are not flown by ridiculous pilots.”

It was seriously time for me to be done for the day…

I have a disability.  I’m not a kid.

A couple of months ago, I got word that Kansas had changed one of their Medicaid rules. See more about that here. For a few years now, a background check was required for every caregiver I hire. That is understandable. The state of Kansas wants to make sure that nobody going into the homes of vulnerable adults is going to cause them harm. I get it. These days it is further required that the background check come back before any caregiver I hire can start working. That would be a fine policy if the process took a couple of days. I have been told it can take up to three weeks. Because I mostly hire college students as caregivers (I can give you about 37 reasons why that population is the most effective to meet my needs) this policy is a problem for me. It might be difficult to convince college students to wait around for background check clearance when they have the option of working at McDonald’s and getting paid much more quickly.

When I talked to the women in charge of the program, I was told this new rule was “for my protection.” They didn’t seem to understand that if I have to get in and out of the shower on my own because I am shorthanded on caregivers, there is a very real chance that I could fall and break a hip. Therefore, giving me immediate access to the caregivers I hire is also for my protection. This new policy would make a whole lot more sense to me if the background checks were optional.

I have come to terms with the reality that I am a vulnerable adult. That means some people are going to make unfair assumptions about me. I also know that I worked very hard to get my Master’s degree and I am a published author.

My first book will be out in the Fall.

I don’t kid myself.

Posted in Ableism, Accessibility, cerebral palsy, choices, Disabilitiy, disability etiquette | Tagged , , , | Leave a comment

Just One of the Crowd

crowdMost of the time when I go places, I stand out. People notice me. Not by choice, just by circumstance. Because my situation is different than most, accommodations are required routinely in my day to day life. I have to find the elevator. Or a curb cut. Or the accessible entrance. And hope that not every accessible parking spot has already been taken. And that people are using the stalls that are appropriate for them in the restroom. Most of the time, that is okay. Just a fact. A reality. It’s not something I spend much time thinking about. Once in a great while though, there comes a day when I sincerely appreciate simply being one among many.

It happens once a year. The publishing company that I work for has a writing conference for all the people who write and take photos for their various magazines. I have a good time spending the day with people who have similar passions. These are some people who truly understand why I need to write.

It’s a good crowd.

Yesterday’s speakers talked about how to write a memoir (my kind of thing) diagraming sentences, (not exactly my thing. Actually, who am I kidding?) and a film project about Langston Hughes (who spent his childhood in Lawrence.) There was one more speaker but I ducked out early. Having spent the previous two days in the hospital started to catch up with me.

The writing conference was held in the basement of the Journal-World building. It was where I went for the interview before I started writing the column that I do. I’ve been there a few times since. The newspaper staff is on the main floor and there are several other rooms downstairs. The latter is where the conference was held.

What impressed me when I arrived was that the set up was totally accessible. There were tables and chairs configured in rows, and I could get under any table in the room. I chose a spot in the first row as a place to sit. But that was only out of habit. Usually, I do so because when I am up front there is less of a chance of not being able to see over something that is in front of me. Based on the setup yesterday though, it would not have mattered. I would have been able to see everything no matter where I happened to be in the room. That doesn’t happen often. Although I sincerely appreciate every time anyone makes an accessible space for me at an event I am attending, it always warms my heart when the venue is totally accessible to begin with. That is what settles in my soul as true inclusion.

When it was time for lunch, my caregiver and I went out to the lobby where sandwiches were arranged on trays, just like the fruit croissants and coffee had been in the morning. After waiting in line like everyone else, I told the woman behind the table (she’s an editor) what kind of sandwich I preferred, and she handed me a plate before she served the next person in line. That is, I went through exactly the same process to get lunch as every other person there. It was awesome! All that and a bag of chips too. Grin!

A couple of times during lunch I had the opportunity to chat with some other writers. Each conversation focused on writing. Nothing else. Each one asked me what kind of column I wrote and I asked them the same. It was a completely level playing field. And I loved every minute.

When I told Nathan, my boss, that I was going to leave early because I wasn’t feeling stellar, he graciously volunteered to wait with me in the lobby while Ally, my caregiver went and got the car. Then, because it was raining pretty significantly, he put an umbrella over my head and walked out with me, staying with us until we got me transferred from my wheelchair to the car safe and sound. I’ve known Nathan for the past several years. His gesture was incredibly nice but I know it had nothing to do with my disability. I’m willing to bet gold that Nathan would have done something similar for anyone going out in the rain. He is a really nice guy.

Being at this particular writing conference was good for me. A welcome change.

All day I was just one of the crowd.

Posted in Accessibility, Disabilitiy, inclusion | Tagged , , , | Leave a comment