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

My Cloud

The question usually comes from good friends, at a time when I am struggling. They want to know how to help me the most.

What is it like to have a psychiatric diagnosis?

It’s like there is a dark cloud following me all the time. It isn’t always directly overhead, and some days I don’t even notice it. But it’s always there. Part of the landscape. At times just waiting to swoop in.

On most days all it means is that it’s a little harder to be happy. Or maybe that I have to process some emotion before I can focus on today. It’s the reason my reactions are on overdrive occasionally. My emotions can have the upper hand and overwhelm me. And I have a harder time with that than anybody else. I promise.

Sometimes there is thunder, in the form of a trigger, and I can put on a raincoat and galoshes. I have been known to tell close friends what thunder sounds like to me. That way they can help me de-escalate when it rains. Sometimes storms hit me out of nowhere when I wasn’t expecting to get wet. And then there are times when a monsoon has been known to put me out of commission for days at a time.

It’s not something I can “snap out of” or “get over” and it doesn’t help when people tell me to look on the bright side. Believe me, I put forth lots of effort to hold myself together the best that I can. Sometimes a flashback from a long time ago completely rocks my world. Sometimes I can take a long time to recover from that kind of thing.

And the cloud is still there.

What can people do to support me?

Understand I have a dark cloud following me. Don’t be scared or awkward. It’s just a cloud. It is simply one more thing in my life that I have to manage.

Don’t put me in a box with a label. There are others who deal with a similar cloud, but I may respond to a particular situation in a completely different way than somebody else. Whenever there is thunder, know that I hear it, even if nobody else can understand why it is such a big deal. And please be mindful enough not to create more thunder in my life if it can be avoided.

My dark cloud is unique. It doesn’t belong to anyone else. And even if someone got rid of their dark cloud by doing a particular thing, it does not mean that the same remedy will work for me in the same way.

The cloud that follows me is part of my world. Sometimes it frustrates me because it makes my life harder. Sometimes it makes me sad because it colors how other people see me. Once some people have been told about the cloud, they run in another direction. There have also been numerous times over the years when people have blamed my being hurt on the cloud instead of taking responsibility for the things they do that cause me pain. That is not okay. Compassion is what I need more than anything.

I’m Lorraine. cloud with rainbow
I still laugh out loud and try not to take life too seriously.
Back in the day, I was a serious athlete. Made the U.S. Paralympic team in 1986. Then the games were canceled due to terrorism.
Used to dance as well, but Brandon and Rachel have little Lawson now and Brandon’s free time has become pretty scarce.
Writing is one of my passions.
I prefer romantic comedies over science fiction movies.
My “made on the stove” popcorn is legendary, I’m told.
Advocacy is part of my soul.
Road trips are the ultimate good time.
Sonic cherry limeades are the bomb.
Raisins make me gag. So do black olives and pimento cheese.
A vegan diet is working for me these days.
I love my job at Lawrence Magazine.
Cuddling with my spectacular service dog is my favorite past time.
Jigsaw puzzles used to challenge me. Not so much anymore. These days I tend to get bored if I can’t find all the edge pieces right away.
’80’s music is the best; it reminds me of my high school days.
The Little Drummer Boy will always be my favorite Christmas carol.
Being crowned Ms. Wheelchair Kansas 2007 was amazing; the thing is I am not really a “crown and sash” kind of girl, so every time I made an appearance as a titleholder I had to step out of my comfort zone a bit.
I miss George.
The West Wing is, in my opinion, the greatest tv show of all time.

And I respectfully request that when we are together, you see all of me.

Don’t let my psych issues “cloud” your judgment.

Posted in Advocacy, compassion, Disabilitiy, Get To Know Me, how to help, Mental Illness, negative perceptions, Psychiatric Diagnosis | Tagged , , , | Leave a comment

I’ll Never Run…

Chris TildenIt was a beautiful and crisp October day a couple of years ago when I met Chris. As Director of Community Health at the Lawrence-Douglas County Health Department, he, like me, wasn’t officially one of a team of people spearheading the effort to renovate East Ninth Street in Lawrence.  He is just a self-proclaimed passionate advocate for safe, inviting sidewalks and trails. He, like me and many others, is all for fixing the potholes and the cracks in the sidewalks to make the whole thing much more user-friendly. Chris is also an active member of LiveWell Lawrence, a coalition of community leaders who, through various approaches, hope to nudge residents in Lawrence and Douglas County toward healthier futures.

Because the East Ninth project would increase the length of some of the accessible bike paths in this town, the project fits right in line. In addition to making the sorely needed repairs to 9th street and what surrounds it, the plan is also to create an “arts corridor” of sorts, showcasing works of local artists along the path.

It’s a very cool idea.

On that fall day, I was invited to share my thoughts on accessibility.
Soon after the meeting with the team began, Josh, the architect, asked me what I would want in terms of accessibility if I could have anything. My confident response came without skipping a beat. “I want to be able to have an accessible route from my house to downtown (my driveway borders a city-owned bike trail) so that I can go get a cheeseburger whenever I feel like it. Since I don’t drive, I want to be able to do that stuff without having to have the help of a caregiver.”
Chris spoke up first. “That doesn’t seem like an unreasonable request, Lorraine.”
Everyone agreed, which I found delightfully empowering, to say the least. I am used to having to advocate for things that would improve my life much more intensely. 🙂
In the time since then, Chris and I have become friends. He has read testimony to the city commission on my behalf when I could not attend a meeting. On another occasion, he gave me a ride to one of the commission meetings because he thought it was important they hear my story in person. He came to a potluck that I had last November and even complimented me on my chili. We have shared other meals and lots of laughter together as well.
One of the things I admire about Chris is that he is a big runner. We have talked about how running is almost a non-negotiable thing for him, no matter how busy he is with other things, the same way writing is for me. Last night we were messaging back and forth, touching base about several issues. He said, in part:
“You know I love running and I talk a lot about it with you. Do you ever feel that I talk too much about running with you, given it is something you can’t do? My guess is no; you don’t mind it at all. My guess is you like to hear people talk about what they are passionate about, in the same way, you hope people would be intrigued and interested in your passions. But there are some people who don’t like people to talk about things they can’t do or have no personal interest in…”
Chris was correct in his guess. I love hearing him talk about his running because he is so passionate about it.  The lift in his voice makes me smile. He impresses me with how far he goes. And I can say with conviction that there has never been a time when Chris has talked to me about his running that I thought about it being something I can’t do. Even though I will never run.
On numerous occasions in my past, friends of mine have stopped a conversation abruptly because they thought they were offending me when the subject was beyond my physical capabilities. What they might not understand is that I try not to spend much time focusing on what I can’t do.
Reality is that there are many things I am not able to do because of my circumstances. That is true for most of society.
Very few people can perform brain surgery. I still want to hear about conjoined twins who are successfully separated.
Very few people can climb Mt. Kilimanjaro, but whenever I hear about someone reaching the summit, I am impressed.
Very few people can pitch a perfect game in baseball or score 40 points on a basketball court. But I want to hear about the athletes who accomplish those things. They deserve recognition and respect.
I am not married and I don’t have any kids. I want to hear about as many family issues as my friends are willing to share with me.
The bottom line is that I want people to talk to me about whatever is on their mind, their passions and their curiosities, without reservation.
And I will never run.

Posted in Ableism, Advocacy, changing perspectives, communicating respect, Disabilitiy, Friends, inclusion | Tagged , , , | Leave a comment

Give Me Dignity…

DignityIn one of my college classes, someone shared his opinion that when Patrick Henry said “give me liberty or give me death,” he meant that if he could not be in control of his life, then he didn’t want to live.

On March 27th, Mark Smith, a businessman with cerebral palsy was forced off an American Airlines flight because he had a disability. When writing about the experience, he said, in part:

“I was dumbfounded. American Airlines personnel were refusing to transport me because I am a person with a disability who uses a wheelchair. This scene was unquestionably a violation of a number of federal laws, and I was stunned that it was happening to me. However, in that moment, I kept all emotions in check, explaining that my wheelchair was, in fact, airline compliant…The American Airlines group’s response was simply to continue removing me from the plane in a hurried fashion – Captain’s orders. I knew then that there was no reasoning with this dehumanizing situation. Compliance was clearly my only option, as is often the insidious nature of blatant discrimination.

…[A]ll of the other passengers watched, silent. Although many clearly heard that I was being removed because American Airlines didn’t want me and my wheelchair on the flight’s manifest, no one questioned why, in 2017, a businessman with a disability was being ejected from a plane? In that moment, I realized the gravity of it all: I was being stripped not just of my civil rights, but of my humanity. For the first time in my life… I was discarded as a human being – literally.” Read the full post on his blog here.

I have read that last line many times since I heard the story. And these days it has resonated with me. While I have never been forced off a plane while everyone remained silent, I can relate just a little.

For many years in Kansas, what is now the Department of Children and Family Services had a rule. If you had a disability and required the assistance of caregivers, you could make and keep $165 of whatever salary you earned per month.  After that, you had to pay half of your salary to DCF each month to offset the cost of your caregivers. Therefore, it didn’t make a whole lot of sense for people with disabilities in my situation to work, because you would lose nearly half your salary in order for Medicaid to pay your caregivers, and they were the ones who made it possible to work. That is, my caregivers help me get out of bed and into the shower and to get ready for the day. Without that assistance, it wouldn’t be feasible for me to have a job since I cannot do those things on my own. It was a no-win situation.

Because advocacy lives in my soul, I had the honor of being part of a statewide committee that set out to change things. It took several years, and lots of testifying in front of state senators and representatives, but on July 1, 2007, the WORK portion of the Working Healthy program when into effect. The bottom line means that Kansans with disabilities can now earn almost $60,000 per year without losing the caregiver coverage they require in order to work. And all it costs is a small monthly premium.

Score.

One of the things that appealed to me about the program was that it gave consumers a choice. People could either go through an agency to get caregivers or they could self-direct their services. Going through agencies works for a whole lot of people, it has never worked for me. The last three times I have gotten my caregivers through agencies, two of them stole money and the other tried to hit me. I literally shake with terror at the thought of going through an agency again.

But aside from all of that, the agencies would send a different person every shift, so I had to spend a whole lot of the time explaining what needed to be done. Then do it all over again the next shift, without an end in sight. It also isn’t unreasonable to be uncomfortable having someone I have never met help me in and out of the shower and help me get dressed in my home. I am okay with how vulnerable I am. That is my life. But it should be my choice who I am vulnerable in front of. I am 48 years old.

So I took on the responsibility to advertise, recruit, hire, train and manage my own caregivers. And that is a huge, sometimes totally frustrating task. But I took it on willingly because it meant that I had the power to hire who I wanted. And after almost 31 years of hiring people to assist me, I have determined that college students are the best fit. They have more flexibility in their schedules than most other people, and because most want some experience to put on a resume, they have more motivation to be here.

A few months ago, the state required background checks for every caregiver that was hired. I get it. They want people with disabilities to be safe. More recently they made another rule that background checks have to come back before a caregiver can start working. The process takes about three weeks.

That’s a problem.

What it means for me in real life terms is that after I hire a caregiver, they can’t start working for three weeks, which means that they won’t get paid for about five weeks. I’m not sure who will stay with me if that is required.

I am willing to bet that the people who made that rule do not have obvious physical disabilities and have never been dependent on anyone else to meet their basic needs.

When I talked to the powers that be and tried to explain my situation, they told me I was welcome to go through an agency to get caregivers. From a place of advocacy, I asked if it would help to contact my state representative. “If you do that,” I was told, “I would be the first to tell him that you have the opportunity to use an agency, and you are simply refusing to do so.”

In other words, I was squashed like a bug.

I have talked many times about how I don’t have a whole lot of power in my life. I can’t drive and I can’t put on my socks and shoes, and there are many other things that cerebral palsy has made sure I can’t do. My power comes from being given choices. My power comes when people consult me about issues and we compromise before anything is set in stone. And being given that kind of power is what gives me the dignity I deserve.

I might not physically die when my power is taken away and I am told there is nothing I can do about it. But over time my soul might.

Give me dignity…

Posted in Advocacy, cerebral palsy, Disabilitiy, Government Programs, Independence, Medicaid | Tagged , , , , | 3 Comments

I’m Not “Special”

special 2Special. The word warms my heart in many ways.

Except when it is used in the context of my disability.

Then it kind of drives me crazy.

Maybe it’s the label.

When I was in school, I was mainstreamed. It was decided very early that it would not be appropriate for me to be in “special education.” From the time I was in preschool until the time I graduated with from high school, as a student with a disability, I received the free and appropriate public education that the law entitles me to. Then I went on to college and obtained a Master’s degree after that.  My needs were accommodated as they arose, and my teachers and professors had the same expectations of me as they did of my peers. I was expected to learn to the best of my ability. And that is the way that it should be. Even if all of my peers had been affected by disability as well.

These days, I am not a “special needs” adult. I am an adult who has the same needs as everyone else. To be accepted, included, and given dignity, respect, and choice. I need employment. A social life. A group of friends to connect with. The way I accomplish things may be a little different than what is typical, but that simply makes me unique, not special.

There are many things in my day to day life that are special to me. Snuggling with my service dog. When a caregiver tells me they enjoy their job. Getting a phone call from someone I haven’t talked to in a while. A handwritten note from a friend, or a text that reminds me someone is thinking of me. When there is something to celebrate, sometimes I have a special dinner or say that something is a special occasion.

And I think I am special, too.

I’ve heard people say I have a great laugh. That I’m a good writer. That they enjoy watching me dance. A few years ago I had a friend tell me that she had never met anyone who such an interesting perspective of the world. I have had other people tell me that they learned a few lessons about how to handle adversity from watching how I live my life. Compliments like that are really special.

I care about the environment. Advocacy. Empowerment. Communicating well. And I want to be heard. And taken seriously. I want my needs to matter.

I want to encourage other people. To have a positive impact. And teach things that others might not already know. And if I change a negative perception or two in the process, then I have done what I set out to do.

All of those things make me who I am.

There are all kinds of ways that I believe I am special.

I just don’t believe that my having cerebral palsy is one of them.

Posted in Accommodations, Advocacy, Attitudes, dance, Disabilitiy, Get To Know Me, negative perceptions, service dogs | Tagged , , | Leave a comment

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