This is the Life that I Fought For

this is lifeIn the late night hours of October 3rd, 1968, my mom went into labor. With me. It caught everyone off guard because I wasn’t due for another ten weeks or so. But, I guess even then, my stubborn streak showed itself as I made my way into the world early the next morning. Things were touch and go for awhile. I was baptized pretty quickly in case I didn’t make it. My next six weeks were spent in an incubator, where I fought ferociously for life.

As a kid, many surgeries and countless hours of physical and occupational therapy consumed my days. I was taught how to dress myself and navigate buttons and snaps with my limited finger dexterity. I also learned to develop things like my eye-hand coordination which would help me accomplish everyday tasks. In addition, I was taught how to get up on my feet, first with a walker, and then with canes. When I was young, my parents were told to routinely take me outside and drop me on a mattress in our yard, so that I would instinctively learn how to tuck my head and put my hands in front of my face when I fell. Given my lack of balance, my doctors said, I was going to fall often. Speech therapy was added to the mix in grade school because I had trouble pronouncing my “L’s” and my “S’s.”

In junior high, I had to switch schools and attend one about a half hour away from my house, because the school in my neighborhood was not accessible.

I fought against all of it with everything I had. I just wanted to be a typical kid. But I also understood, from the time I was small, that this was my life, the one I had fought for ferociously.

Sports became the outlet in high school that consumed me almost constantly. That was because sports were the first thing I found that I could do because of my disability, and not of in spite of it. I wanted to excel because sports taught me to work with my disability instead of against it.

As I got older and had more life experience I began to understand that people often see those of us with disabilities as “broken” or “less than.” That had been my experience sometimes. And as a result, I learned advocacy skills to fight injustice and to try to improve the lives of myself and others like me. Sometimes that works, and sometimes, even now, I wonder if the people who have so much power over my livelihood will ever truly understand what I experience.

This is my life. The one I fought for ferociously.

In the early morning hours of October 1st, 2017, five people were shot in the middle of downtown Lawrence where I live. Three of those people died. It hit close to home.

On the evening of October 2nd, in Las Vegas, Nevada, Stephen Paddock broke the window in room 135 on the 32nd floor of the Mandalay Bay Resort and Casino and started shooting into the crowd of thousands who had gathered to enjoy a country music concert. The last time I checked, 58 people had died, and 515 were wounded. It is hard for me to wrap my mind around so many lives being snuffed out so senselessly.

As I have said many times in recent posts, situations with new Medicaid policies have made my life difficult lately. For a few months now, I have had only a fraction of the care I have needed. There were times I have been angry. There were times when I have been overwhelmed. There were times when I have been terrified.

What got me through was the compassion and the love that I experienced in the situation. A friend of more than 20 years drove an hour each day for about two weeks to make sure my basic needs were covered. A former caregiver who currently lives out of town worked a shift because she knew I needed the help. A woman from my church came for an afternoon. She did some dishes, cut up some veggies and got me some groceries. And one of the nurses from Lawrence Memorial Hospital who I met a couple of decades ago came over last weekend, in between her two jobs, to help me in and out of bed. She even brought me homemade soup.

It’s a whole lot to think about on the eve of my 49th birthday.

My life is not easy most of the time, but it is fragile and precious. And no matter how frustrating my life gets, this is the life I fought for. Ferociously.

Love and compassion make it okay.

 

 

 

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Posted in Ableism, Advocacy, caregivers, cerebral palsy, Disabilitiy, Government benefits, Physical therapy, premature babies | Tagged | 1 Comment

Be A Reacher

reachersAs a woman with a disability who has been wheelchair mobile for as long as I can remember, it should come as no surprise that I accomplish many day-to-day tasks in a manner that is somewhat different than most of the typical population. There are shoelaces that hang from the knobs of every door in my house so that I can reach behind me and close a door as I am exiting a room if I need to. My cups and plates are on low shelves in my kitchen so that I can access them easily when I make a meal. Several grab bars are in my bedroom and bathroom so I can use them for stability when I am transferring or getting dressed. That is simply how my world works. I’ve never known any different.

One of the pieces of low-tech assistive technology that I use every day is a reacher. That is a metal stick with a trigger on one end and a grip mechanism on the other. Its main function is to pick things up when I drop them because I am not always capable of bending completely at my waist to reach the floor. And let me tell you, because of my limited finger dexterity and my habit of bumping into things, I drop lots of objects routinely. If I happen to drop food, Leah, my service dog, is all too happy to help. After she has chewed and swallowed the mess, she is quick to tell me that I shouldn’t feel guilty or embarrassed. She knows we are all clumsy from time to time. Sometimes when I drop food because I am having a spasm, things work out very well for her.

When I drop a non-edible object though, it’s a different story. I do a quick search in my house for the nearest reacher and bring it to the object that I dropped. Then I use the reacher to grab the edge and slowly lift whatever it is onto my lap. There are times when the process is slow. Objects like my cell phone are flat and slippery, and the smooth edges aren’t always easy to grab, but with patience and perseverance, I almost always get what I am after. I see my reachers as the tools that get me from where I am to what I want.

For the last few weeks, with the exception of some friends “pinch hitting” out of the kindness of their hearts, I have been without caregivers. Given all the things I am dependent on other people to do, the situation was often terrifying. One morning I fell out of bed and was not close to my phone. I had to put a post on Facebook to ask friends in Lawrence to call 911. The plan was successful. The paramedics got to me about 45 minutes later. But I was still badly shaken and emotionally off balance for the rest of the day.

Not everything was bad though. There was a day when I was able to change my clothes all by myself, which is not something I usually do. I put on my shorts over my tennis shoes and then I used my reacher to get my shorts positioned correctly and also to help me pull my shorts up. The process of my changing clothes took me about two and a half hours. There was a whole lot of frustration and I had to take several breaks so that my emotions did not get the best of me. But I did it. By the end of the process, I was dressed. and that accomplishment is all mine.

The last few weeks have been difficult, and there were times I was in situations when I was not sure what to do. It was in those times that I tried to remind myself to “be a reacher.” I had to figure out how to get myself from where I was to what I wanted, and in the process, there were some days I completed tasks on my own that I never thought I could. Looking outside the box, using visualization and stating the outcome of what I was going to do before I started the task were all things that helped me in doing what needed to be done. I also often told myself I had more strength than I felt at the time, and it was possible to push the limits of what I thought I could achieve.

I sincerely hope I don’t have to be quite so independent again at any time soon. That was rough. But I have several things that I am hoping to accomplish in the next few months. I made a sign to hang in my office.

It says: Be A Reacher!

Reminding me to figure out how to get from where I am to what I want.

 

Posted in Accessibility, Disabilitiy | Tagged , , , | 1 Comment

Bad Moments…Not Bad Days

bad moment quoteIt’s no secret that things have been rough for me lately. Not only have I had to face one of my biggest fears, but I have been surrounded by it. Having to go through an agency to meet my caregiving needs instead of being able to hire people independently goes against almost everything I am about. For more than thirty years, my life has been defined by fighting for my independence and finding my voice as well as making my own choices. Because of various circumstances, going through an agency to get caregiver coverage will take some of that away.

There are times I have wanted to do nothing more than turn and run, but if I could do that, I wouldn’t have a need for caregivers. That seems ironic somehow.
It hits me hard sometimes. The loss of control. The decrease in dignity. The thought of absolute strangers coming into my house to help me with the most personal things that I do. And it’s a big deal. But it’s up to me not to make it everything.
People who are close to me know that I am no stranger to frustration and disappointment. Those things are a part of life for everyone, maybe even more so when a person lives with a disability. But bad days? The older I get the more I am learning that, for me, those are a decision.
When I get bad news or something doesn’t go the way I want it to, or something happens that is unexpectedly unpleasant, it is natural for me to feel sad or hurt or angry. And I am a huge believer in people feeling what they feel completely instead of trying to minimize it. I know that when someone feels into a negative emotion it can feel all-encompassing, and the moment seems to last for an eternity. The thing that I need to remind myself is that negative feelings don’t last forever and a bad moment doesn’t have to equal a bad day.
When I look around at all that is happening in the world, so many people are affected by things that are out of their control. Hurricane Harvey hit the neighborhood where I grew up with a vengeance, and many families who were a part of my childhood lost their homes, their cars and most of their belongings. It hurts my heart to think about people I knew when I was younger, people I care for, dealing with all of that. And then I see Facebook posts from the same people in Houston who are incredibly grateful for the sack lunches they received from strangers during demolition days and the groups of volunteers they had never met who pitched in for hours helping people who needed assistance. Are they in a bad situation? Yes. Did they have a completely bad day? I don’t think they would say so.
Because of some glitches with Medicaid rules, I technically have not had any caregivers this week. (The agency can’t start until Monday.) Have there been moments I have been scared spitless? Yes. Am I spending more time alone than usual? You bet. And that has been proven to be not a great thing for me. But in the last few days, I have put effort into doing some things for myself that I have never attempted before. Some crashed and burned. Some worked out. I would never have known about the latter if my current circumstances were different.
My friend Andrea lives in Lee’s Summit, about 45 minutes away from me. I have seen her much more often than usual lately because she is checking on me whenever she can. She keeps up with my laundry and does my dishes when she is here, all the while reminding me in many ways why we have been friends for more than twenty years. That has been a good reminder that not everything in my life is changing. I need to know that. Eric, who technically stopped working for me last Sunday, comes by for a bit in the evenings just to help me into bed. It’s something he doesn’t have to do. He does it anyway.
Do I still get overwhelmed with the idea of working with an agency when I vowed I would never do so again? Indeed. I have sobbed and screamed and cursed the unfairness of the world and the fact that I am so dependent repeatedly. At other times, I have invited my heart and my soul and my mind to be open to the possibility that working with an agency might be a good thing for me.
There is also something to be said for looking the deepest fear in your soul square in the eye and showing it who is boss. If I can do that, at least eventually, I will feel unstoppable.
I am certain that I am not yet finished processing all the emotion around this situation. I will be okay with the bad moments to come. And I will do my best to keep a simple truth in the forefront of my mind.

Bad moments don’t have to equal bad days.

 

Posted in can do, caregivers, choices, Disabilitiy, Facing a fear, Finding Your Voice, Independence | Leave a comment

I Want Spectacular!

spectacularIt is something I vowed that I would never do again. There have been too many bad experiences in the past. And besides, it takes away my power.  Some of my humanity might even be at risk. I have hired and managed my own team of caregivers for more than 31 years, and I said I would never again use an agency to meet those needs.

For some people, agencies are a perfect solution to getting some needs met without having to rely on family members or friends. For those people, it works to have someone come in for a few hours per day, get done the tasks that need to be done, and then the professional caregiver goes on to the next client. I can see that.

My situation is a bit different. Because my disability prevents me from driving, I can rarely leave my house on my own. My caregivers are the only people I see in a day about 90% of the time. That is not a bad thing and I am in no way trying to elicit sympathy from anyone. Since that is the case, it is important to me to have a personal connection with my caregivers. I don’t mean that I want to be close friends with them. I mean that I want to make the decision as to who I hire. I want to be able to train whoever works for me to do things in my house the way I want them done. And I want a bit of flexibility in the schedule for both my caregivers and me in case unforeseen things come up for either of us; the times they arrive at or leave my house can be tweaked a bit. Working through an agency means I can’t do any of those things. And those are the kinds of things that add so much “goodness” into my life.

I have also said this a few times before. I am okay with the fact that I am a vulnerable adult, but it needs to be my choice as to who I am vulnerable in front of. That is the only way I can maintain my dignity and individuality.

Since I started managing my own caregivers, the biggest challenge is that the position is incredibly temporary. Students going into health professions tend to work for me in order to get some experience to put on their resume. Other people work for me because the schedule can be worked around classes and other jobs and such. Lots of people work for a semester or so and move on to other things. All of that means I am looking for new caregivers on a fairly regular basis. I know all the places to advertise that have gotten good results in the past. I have even learned how to look outside the box with my advertising. Nothing has been working lately.

In recent months, one of my caregivers got a full-time job elsewhere. Another got very sick and had to quit working for me suddenly. A third caregiver who worked for me last semester and was supposed to come back after the summer decided at the last minute not to return. I have had numerous interviews over the last few weeks, and everyone who I have offered the job to has turned me down.

The situation is somewhat desperate, and I start working with an agency again later this week.

The idea of having strangers in my house who I had no say in hiring is terrifying to me. I don’t want to be “just another” on a caseload. I can’t change a schedule without several days notice, and I won’t have any former caregivers around to help to train the new people in the manner I have done before. And because of the way Medicaid funding works, I will have significantly fewer hours with caregivers that come through an agency compared to the hours I was allotted when I hired caregivers independently. So many things about this situation are difficult.

Really good, well-meaning people have told me that everything is going to be okay, and I believe them.

Lots of people can make my bed and put my shoes on and sweep my floors for me. But in working through an agency I have to give up some of my freedom. And because I spend a significant amount of time advocating for people with disabilities to stay out of nursing homes, this feels like a huge step backward in my life. That is the hardest part.

Maybe this is a bit selfish, but I want the caregivers I have had in the past who take me to Sonic when there are only 15 minutes left in their shift because a chocolate shake sounds so good to both of us. Or the caregiver who stayed with me half the night after one of my surgeries because I was so sick and she didn’t feel comfortable leaving me alone. Or the caregiver who got a Christmas gift for my service dog because she didn’t want him to feel left out if she only gave one to me. Or the caregivers who pick up something at the grocery store that I mentioned I needed a few days ago, but neglected to put on the list. Or the caregiver who came in and told me we were going for a drive because he knew I had not gotten out of my house in two days. I have countless stories like that…

Those kinds of things are spectacular.

So I am making the decision that working through an agency to get caregivers is only a temporary situation for me. That is the only mindset that allows me to keep my sanity right now. I will continue to put ads up on Craigslist and Indeed.com and put fliers all over campus. I will continue to ask the professors that I know to announce the position in their classes. I will post information at the library and the community mercantile and continue to talk about it with members of the church that I attend.

And I will believe I will find several awesome caregivers that I can hire independently very soon.

Because I don’t want to settle for everything just being okay.

I want spectacular!

 

Posted in caregivers, Disabilitiy, Facing a fear, Independence, Making Changes | Tagged , , | Leave a comment

“Drop and Give Me Twenty…”

$20 billIt was over twenty years ago, and I was a “fresh out of grad school” rookie, eager to do well in my first real job. Although it meant moving from the town where I had attended college and gotten my master’s degree, a few weeks after graduation I accepted a position at Independence, Inc., a Center for Independent Living in Lawrence, Kansas. The organization served people with disabilities in a wide variety of ways. My title was that of Independent Living Skills Trainer, which meant that I helped our clients learn skills of their choosing that would enable them to increase their independence. During my almost five years of employment, I worked with people who wanted to learn budgeting skills, how to successfully use the community transportation system, effective ways to grocery shop, cook, clean, advocate for themselves and a whole lot more.

My favorite client was a young man named Todd. He had an intellectual disability, and I quickly discovered he took things rather literally. In our work together we went over skills including safety, successful social interactions, and various ways to ask people for things he wanted or needed effectively. We also spent lots of time at the grocery store. When we first started, Todd carried a list that his mother had written out and we would find the items on it in the store together. Over time, he made his own list and learned to count out change for the cashier. He made slow and steady progress. Eventually, I would simply sit at the front of the store and wait while he completed his shopping on his own. Those were really good days.

When we first started, Todd carried a list that his mother had written out and we would find the items on it in the store together. Over time, he made his own list and learned to count out change for the cashier. He made slow but steady progress. Eventually, I would simply sit at the front of the store and wait while he completed his shopping on his own. Those were really good days.

Todd and I worked together twice every week for several years. And I always looked forward to our appointments. He had a great attitude, was incredibly respectful and was always ready to work hard. Even when what we were trying to accomplish was difficult for him, like counting money correctly.

He had a part time job in the mornings at Hobby Lobby. In the afternoons, he would either work on something with me or work on a project in the computer lab of the agency. In between, he would eat his lunch in our conference room.

His lunches were epic., rivaling any gourmet meal I have ever seen. He always packed them himself. The sandwiches could have come from a deli. In addition, there was fruit, chips, raw vegetables and dip, and numerous cookies and other sweet things for dessert. He ate all he brought with gusto and flair. Sometimes he also brought snacks, in case he got hungry while he was working at the center.

One day, I was a witness when a coworker of mine passed by him as he was eating lunch in the conference room. Because we all really liked Todd, he got teased good naturedly pretty often. Upon seeing all the food laid out in front of him, this co-worker started to give him a hard time.

“Todd, if you eat all of that, you will end up getting pudgy. Now drop and give me twenty.”

It’s safe to say that Todd had never been in the military and consequently had probably never heard that expression nor any reference to it before. After several seconds of confusion turned to panic, Todd’s answer was one that I will remember forever.

In a voice that was both shaky and uncertain, he stammered, “I don’t know how, I just don’t know how, and besides, I don’t have any money.”

A classic Todd response. Totally, completely and wonderfully Todd. Both the coworker and I assured him quickly that all was well.

I must confess, I have been known to over-indulge on good food much more often than I should. And I, like Todd, am unable to drop and give anyone twenty, at least in the conventional sense. When that particular memory comes to mind, I simply make sure I know exactly where my purse is,  ready to hand over a $20 bill to anyone who might suggest it.

And I smile.

Posted in can do, Disabilitiy, Good Memories, Independence, Laughter, Laughter,, overcoming challenges | Tagged , , , | 1 Comment

Sometimes I’m Wrong

At first, I wasn’t sure what to think. In my experience, usually when t.v. shows are made about people with disabilities simply living their lives they tend to be sickeningly drippy. Think Tiny Tim meets Superman. Get the picture? Most shows I have seen tend to emphasize the struggle and invite pity instead of a portrayal of empowerment. To me, there is typically not an accurate representation of what living with a disability is actually like either in movies or on television So, when I heard that “Speechless” was going to be a show on ABC this past fall, I expected it to be more of the same.

I was wrong.

The show is about the DiMeo family, consisting of mom and dad and three kids. They live in a house that is falling apart, and on the first show, they make it known that the kids have been in six schools during the previous two years. They are continually searching for the right learning environment for one of their boys. The oldest son, J.J. has cerebral palsy. The actor who plays the character (Micah Fowler) is affected by cerebral palsy as well. His mom, (played by Minnie Driver) is a fierce advocate for her son as well as being known to be incredibly overprotective. She has disagreements with the school’s administration routinely. J.J. has disagreements with his siblings, as all teenagers do, and is sometimes at odds with his parents as he struggles for his own independence.

Some of the episodes have explored topics like being friends with other families that have a family member with a disability, how J.J. balks at “special” treatment and wants to be seen as an equal, and my personal favorite, how demeaning it is when other people engage in “inspiration porn.”

The other thing I truly appreciate about the show is that it examines the affect that J.J.’s disability has on the rest of the family. There was an episode when his siblings were curious about who was going to care for J.J. when they were grown and their parents were gone. Several episodes have touched on how J.J’s siblings resent him sometimes in various ways and how each character works through that. Particularly moving are the scenes where J.J gets to be a protective older brother in his own way; which is not typical because of his disability. But J.J. does everything in his power to let his brother and sister know that he is looking out for them.

In another episode, when J.J.’s brother asked their dad why nothing fazes him, he replied, “Because when a doctor tells you that there is something wrong with your kid and that he is not going to grow up the way you thought he was, and he turns out great anyway, you say ‘okay, what else you got? Bring it.'” That whole comment is paraphrased, but overwhelmingly awesome nonetheless. It just doesn’t get any better than that.

Perhaps the most impressive part of the show for me is the way that J.J. stands up for himself. He has no expectation that anyone else is going to fight his battles for him. In one scene, he got mad at his caregiver, Kenny, for taking advantage of all the “perks” J.J got at a professional baseball game. When J.J. had reached his limit with that kind of thing, he let Kenny know in no uncertain terms that he felt like less than a human being, saying to this caregiver through his communication board, “You don’t get to do that.”

In order to keep the show authentic and “unsappy”, the executive director of the Cerebral Palsy Foundation is on the set every week. The cast and creators of the show are incredibly familiar with disability issues in a variety of ways, and still, they are aware enough to understand that they might need some guidance when it comes to some issues. Some of the comedy, the cast admits, might push the line between funny and offensive.

In an interview about the show, Minnie Driver said, “You cannot force people to be inclusive. You cannot force them to be unafraid. You can teach them that (disability) is okay.”

When I first heard about the show, I was convinced it was going to be drippy. I was prepared not to mention it anywhere because I was taught that if I didn’t have anything nice to say I should remain “speechless.”

Instead, I am using my voice to say quite loudly: Bravo!

Sometimes I love being wrong.

My favorite scene from season 1 is below. Season 2 premieres on Wednesday, September 27th on ABC.

 

Posted in cerebral palsy, changing perspectives, Disabilitiy, Family, inclusion, Independence, Making people comfortable, negative perceptions, Television, The Cerebral Palsy Foundation | Tagged , , , , , | Leave a comment

Simply Inclusion…

IMG_4635I will say it repeatedly until there is nobody left to tell. A world where everyone is treated like equals and disability is seen as a difference instead of a weakness is the world I strive for. Along with many other people. It’s not going to happen overnight. And even decades after the Americans with Disabilities Act was passed, there is still a long way to go. Progress in baby steps makes me smile. This week I saw two examples of my community heading in the right direction.
Checkers Foods has been my grocery store of choice for several years. They have good produce. They always have lots of stuff on sale. And a few days ago, I learned they have an awareness about inclusion. My caregiver and I went inside to get some food to fill my fridge. Just inside the entrance, I saw something I have never seen before. It was a modified grocery cart that was built to accommodate wheelchairs. The sight was intriguing enough for me to go check it out. The basket in the front of the cart had been removed and a flat platform was in its place. Some pieces of the cart had been welded. And the access symbol was on the side. The same symbol that designates accessible parking spaces. I just love that little guy.
The result was that I could roll my wheelchair directly up to this cart, and put the groceries I wanted within it by myself. The whole thing was so much more comfortable than putting a small basket on my lap. That is painful sometimes. And with this cart I could get a whole lot more food than I could ever fit in one of those portable baskets. I was psyched. Simple modifications to this grocery cart helped me to feel much more empowered and more “just the same” as everyone else in the store. And I’ve been talking about how cool this contraption is to a whole lot of people ever since I discovered it. That makes the whole thing a win-win all the way around.
The other thing that impressed me was that I saw a guy who worked at the store watching me as I was figuring out how this cart worked. However, he didn’t approach me until I asked for his help. My guess is that he didn’t want to take away my independence. When other people have that awareness, it makes me smile big. He didn’t doubt my ability and was available to assist me as soon as I said the word. The whole experience was pretty darn awesome!
A few days later, I went to the community coop with a friend, and we decided to have a cup of coffee. After we ordered, we went to find a place to sit. There were stools available for people who could use them, and a table in the middle of the room that was completely accessible. The table had a sign on it that said, “this table is reserved for people with disabilities when needed.”
What I appreciated most was the wording. The sign did not say “this table is only reserved for people with disabilities” with the implication that nobody else was ever allowed to sit there. It also was not a table that was in the corner of the room. To me, the sign was a message of welcome. My take was that it said “If you are a person with a disability and having a low table would make this establishment easier for you to enjoy, then we’ve got you covered. But you are also one of the crowd. We will not separate you from anyone else or designate a particular table that calls attention to your differences. If you need this accommodation, it is here for you.”
Neither one of the modifications I discovered this week seemed to be a big deal. The grocery cart required some welding. The sign on the table probably was made on a computer in a matter of minutes. Both of those things spoke to my heart. They said “We will meet you where you are to let you know that you are wanted here. In my world, that kind of stuff is incredibly powerful.
I will say it repeatedly until there is nobody left to tell. A world where everyone is treated like equals and disability is seen as a difference instead of a weakness is a world that I strive for.

Simply inclusion.

 

 

Posted in Accessibility, Disabilitiy, Helping people with disabilities, inclusion, Parking Signs | Tagged , , , , | Leave a comment