I ADAPT!

 

ADAPT protest

An ADAPT protester getting pulled out of her wheelchair and arrested in Washington D.C.

We will ride! We will ride!

 

I must have shouted that phrase thousands of times on that summer afternoon, the blazing sun created an intense heat that only magnified the issue at hand. I was part of a group of people with disabilities that were protesting a wrong, in Topeka. At the time, the Greyhound Bus Company had a policy that people with disabilities could not ride the busses unless they had a caregiver who was going to accompany them on their trip. They could not travel alone. This was about choice. And dignity. And autonomy.

It was a few short years after the Americans with Disabilities Act was passed, and this policy was blatant discrimination. One of the things that the ADA says is that it is illegal for a business to have a policy that applies to people with disabilities that does not also apply to the general population.To add insult to injury, Greyhound also had a policy that if a person with a disability needed assistance on and off the bus, the fire department would automatically be called to provide whatever help was needed. Several people with disabilities had complained that they felt like they were on display as they got on or off the bus. It was common for transfers to take place in front of numerous other passengers.

Earlier that morning, Bob Mikesic, one of my coworkers at Independence, Inc. asked me if I wanted to go with him and join members of ADAPT in Topeka, who were going to protest this policy outside the Greyhound bus terminal. At first, I hesitated. In my mid 20’s, I was shy and socially awkward, and I spent a significant amount of time with my head down, just trying to follow the rules. In short, back then I was much less of a rebel. But the advocacy I had learned during my employment was starting to sink into my soul. I knew this policy was wrong. I knew that people with disabilities deserved to be treated as equals. And I was learning that some wrongs don’t become “right” until those with rights fight back. It might have been my first act of civil disobedience, 🙂 and if I were being totally honest, the more time that passed that day, the more excited I became.

As soon as we got to Topeka, I could feel the energy in the air. Changes are not made when people are passive, and many people with disabilities from around the state were drawing from the energy of their frustration as they got ready to voice their opinion concerning these Greyhound policies. Armed with a sign that said, “Wheelchairs can only take us so far…” I added my voice to the chanting.

We will ride! We will ride!

At one point we locked arms and formed a huge circle. Sign language interpreters were translating the phrase repeatedly. Some of the protesters bought bus tickets for the same day, just to see what would happen. Some of us talked to the media who had arrived. And others were chanting the whole time…

We will ride! We will ride!

As I got in the car to return home, my voice was hoarse but my heart was full. I laid in bed that night turning over the experience in my mind dozens of times. And as I did so, I realized that something deep within me had shifted. I understood that advocating for what I needed in my life was not only okay but often necessary. Many people in my life were going to try to take my power away from me. Sometimes they would succeed, but I could always do my best to take my power back.

In the last few months, members from ADAPT have protested in cities across the country, in efforts to make the public aware what the GOP health care plans would mean for people with disabilities. Some got arrested and spent a few days in jail. And then they kept going. As much as possible, they explained what they were doing and why it was important to whoever they could get to listen. They made the point that, because disability has an open enrollment policy, Medicare and Medicaid programs were important for everyone.

I have spent more time than I usually do, during this administration, calling senators and representatives and telling them my story. I want them to know what various policies and plans will mean for my life as a woman with a disability who wants to remain in the community for many years to come. There are so many others like me.

In many ways, I am still that shy and socially awkward girl who spends a whole lot of time with my head down, just trying to follow the rules.

But when it is necessary, I ADAPT.

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Posted in Ableism, Accessibility, choices, Disabilitiy, Government benefits, Medicaid, Medicare, National ADAPT | Tagged , , , , | Leave a comment

Me Too…

There is a beautiful movement on Facebook and Twitter right now and it seems to have gained momentum in the last few days. Women are being encouraged to post the phrase “Me Too” as a status on their wall if they have ever been sexually abused or harassed in any way. The point is to draw attention to the magnitude of the problem. I don’t love what it means that more and more of my friends are participating, but I do love that it seems that as a few people find their voice and speak out, others seem to find their courage.

Decades ago, when I was pursuing a Master’s degree in Rehabilitation Counseling, one of the classes I took was The Phycological Aspects of Disability. The underlying theme was that people with disabilities are often seen as second-class citizens in our society, in a wide variety of ways, and that can have long-term effects. We explored topics such as self-esteem, socialization, and isolation. We also talked about abuse, and the numbers were staggering.

At the time, the statistics were that one in seven boys would be abused in their lifetime, and one in four girls would be also. But if you added disability into the mix, the number rose to one in two. 50% of people with disabilities would be abused during the course of their lives. The reasons for that are somewhat obvious. If someone needs help in and out of the shower or in and out of bed, they are much more vulnerable than someone else who can do those things on their own.  I read some articles about how some people who are deaf or nonverbal were often abused because the abuser didn’t think they “could tell” and some more articles that stated when a person with a disability tried to report being abused and they were not believed because they “must not know what they are talking about.” All of that just makes me want to hurl every morsel of food I have ever consumed.

But some things inappropriate are also more subtle. The fact that people with disabilities are often subjected to situations where they feel uncomfortable and exposed is beyond offensive. Our class talked about how those situations, for most people in society, are not given a second thought. The situations that follow might not be abuse in the general sense of the word, but what happened to me was uncomfortable, and it put unwanted attention on my body. And I felt violated every time. That is inappropriate. Unacceptable. Most definitely not okay.

  • When I worked at the Center for Independent Living in Lawrence, I had a consumer who came to a few appointments with me literally half-dressed because her caregiver had shown up later than expected to get her in the shower. I offered to put a blanket over her so that she would at least be covered. How many people without disabilities would be sent to an appointment in public without all of their clothes on?
  • Many years ago, I had an appointment at KU Med. I went for an ultrasound that doctors had ordered to see if they could find a reason for my kidneys misbehaving. Obviously, in order for the test to be accurate, I had to take off most of what I was wearing. When the test was over, the technician told me she “didn’t have time” to help me get dressed before she publicly pushed me down the hall and parked my wheelchair in the place where I was supposed to wait to see the doctor. Would she have expected another woman of my age to tolerate moving around hallways in a doctor’s office before they had the chance to pull their pants up?
  • And during a recent trip to the emergency room, I told a nurse that I would need help changing into a gown. A few minutes later a nurse’s aide came in. Without a word of greeting, without asking my name or giving me hers, she made moves to start undressing me. For weeks I wondered if she would have done the same thing in the same way if I didn’t happen to have cerebral palsy, but instead simply needed help changing because I had broken an arm or a leg.

In addition, I have had a number of caregivers over the years who physically or emotionally overpowered me because they knew I couldn’t get away and who knew I was too weak to fight back. Some people seem to think that I am pretty easy to victimize…

What I ask is this:

Whenever anyone says that they were abused or treated in a way that made them feel uncomfortable, please listen. Believe them. And offer whatever support that you can.

Does it enrage you that the general population does not seem to have the same respect for boundaries when it comes to people with disabilities as they do for others in society?

Yeah. Me too.

Me too

 

 

Posted in Ableism, boundaries, caregivers, cerebral palsy, communication, Deaf, Disabilitiy, Helping people with disabilities, What some people don't think about | Tagged , , , | Leave a comment

You Need to Let Go…

letting go quoteIt’s not my line, although I wish I could take the credit.

This morning I spent a few minutes watching a Ted Talk about letting go. Jill Sherer Murray talked about a relationship in her past. She had dated this guy for twelve years. She wanted to get married. When he didn’t show up for an appointment with a realtor to see a new condo in their area because “something important came up”, she knew it was time to move on. She made the decision to do so, she said, “because her life was good. It just wasn’t good enough.”

I have spent a fair amount of time in recent weeks thinking about what I really want. Some obvious things come to mind. I want a group of friends that I socialize with often. I want people around me to understand what I am about. I want the book I have written that is coming out in May to have a positive impact on a whole lot of people. I want a full team of phenomenal caregivers available to me all the time. Those are just a few. The last one is the most pressing right now.

Given the circumstances of the last few months, there is one thing I am certain that I don’t want. I never want to live in a nursing home; especially in the near future. That is my biggest fear. And with the recent GOP efforts to repeal healthcare including drastic cuts to Medicaid funding, coupled with the severe shortage of caregivers in Kansas these days, the possibility seems like it is closer than ever. There have been times when I have been caught up in the “It’s not right and it’s not fair” of it all. Especially because there are numerous people who have the power to make decisions that affect my livelihood in majorly significant ways, and most of them won’t ever meet me. That is beyond terrifying.  It has also become clear to me that if I know going into a nursing home is something that I absolutely don’t want, I am going to have to let go of a few things.

If I want to remain in my home for the long-term, one of the things I might have to do is learn to do more for myself than I currently can. For years I have told myself that there is probably no reason for me to go to physical and occupational therapy solely to manage my cerebral palsy. I know how to do stretches to maintain my flexibility, and I know how to get around by myself. But if I want to learn how to put my own socks and shoes on or dress myself more efficiently, I might have to see if my doctor would make a referral for some sessions.

I am going to have to let go of the idea that therapies like those were behind me.

But I don’t think letting go is an entirely bad thing. It’s just scary.

The power of letting go is that it enables movement. I’m not just talking about little things like going to therapy when I didn’t think I would have to, but bigger issues as well. In order to experience the peaceful and positive things in my life most of the time, I am going to have to let go of the anger and pain of injustice even when those emotions are justified.

One of the biggest lessons I have learned over the years is this: If people stay stuck because things happen that are not right or not fair, then they aren’t going to get anywhere. Letting go lets you be who you want. Letting go takes your power back. Letting go lets you decide what is most important to you. Letting go also gives a situation the finger and says “Screw it. I am not going to let this win.”

There are lots of things in life I can let go of:

Bad memories
Bad decisions
The need to be perfect
The need for approval
The need to be right
The need to put other people first all the time
The need to be strong all the time
The need to always play by the rules
Caring about what other people think
Negative opinions about myself or others
My expectations
Who I used to be
Who I thought I would become

And the list goes on…

Tomorrow I am going to call my doctor and talk to her about going to physical and occupational therapy in the foreseeable future.

Because as Jill Sherer Murray says:

Whatever you really want in life, you need to let go for it.

 

 

Posted in caregivers, changing perspectives, Disabilitiy, Learning to let go, Physical therapy | Tagged , , , | Leave a comment

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.

 

 

 

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