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 premires 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

A Lesson in “Parking”

bedroom parking symbolNo worries. The content of this post will be rated “G” and family friendly.

A few years ago, after numerous long discussions with Lee, my wheelchair guy, and a whole lot of soul-searching, I decided to make the switch from using a manual wheelchair around my house to a power one. There are several reasons for that. As I get older I find that the spasm in my body is becoming more intense, and my strength and balance simply are not what they used to be. All of those things combined made pushing myself in my manual wheelchair challenging, and the situation was only going to get worse as time went on. I’ve had several doctors tell me that the bodies of people with cerebral palsy tend to age faster than those of the general population.

In addition, Lee thought a power chair would enable me to be more independent, and he was right. It is only in my power chair that I can take my trash can out to the curb by myself. And a power chair means that I can get out and about in my neighborhood and on a nearby bike trail in a way that I would never be able to if I had to rely solely on my own strength. This power chair sets me up for success in all kinds of ways. It even reclines fully so that I can take a nap during the day if I need to. It’s similar to what I imagine the bat mobile would be like.

Once the power chair was delivered, there were several things I had to adjust to. There are various speeds of my power chair that are appropriate for indoors and outdoors. In the beginning, I got them confused. Let’s just say that there used to be a whole lot more paint on the interior walls of my house than there is now. The learning curve took some time.

Another thing I had to get used to is that my power chair needs to be charged every night. One cord of the battery plugs into the wall, the other plugs into the chair. I always like to keep my chair close to my bed in case I need to get up in the middle of the night or get out of bed in the morning before a caregiver arrives. Since my power chair is significantly larger than my manual one is, putting the chair in exactly the right spot while it is charging is essential. If it is a few inches too close to my bed, I get stuck and there is not enough room to maneuver my feet when I attempt to transfer. If the power chair is too far away, I can’t grab on to it in order to get myself settled after the transfer. This situation is much more complicated than it might first appear. Especially when I am training a new caregiver who is unfamiliar with how I use my chair for leverage when I am transferring from one place to another. On more than one occasion, I have fallen out of bed when I tried to transfer and my power chair was not in the spot where I needed it to be. EMT’s are some of the few people who have seen me before my hair is brushed in the morning. (Once I hit the floor in my bedroom, I am as helpless as an overturned turtle, and caregivers and I typically call 911 for help to get me back up safely.)

Several weeks ago I was explaining to an old-timer caregiver the dilemma of needing my power chair to be in exactly the right place in order for me to successfully transfer out of bed, and not knowing how to get that done consistently. She came up with a brilliant idea. She outlined a box in tape on my bedroom carpet where my chair needs to go. Now all I have to do is tell the new caregivers I train to put the front wheels of the chair next to the tape. It’s a great system. Not exactly foolproof. (I still lose my balance occasionally, but that has more to do with my cerebral palsy than the placement of my wheelchair these days.) But things are a whole lot better than they used to be.

Who knew that I would get a lesson in “parking” from one of my caregivers at the age of 48? Additionally, who knew I would be giving lessons in “parking” to the people around me so that they could do it well.

“Parking” correctly is a good thing.

 

Posted in cerebral palsy, Disabilitiy, Independence, Lessons, Power Wheelchairs, What some people don't think about, Wheelchair | Tagged , | 1 Comment

Go Dance!

Scott and his medalsAs a mentor, he came into my life at the perfect time.

When I was fourteen years old, I joined a sports team for people with disabilities.  It changed my life.  Because I had always been mainstreamed and up to that point, had mostly done whatever my family did in terms of activity, I wasn’t around people with disabilities much.  The exception was a few weeks at sleep away camp for kids with disabilities each summer.

When I joined that team, for the first time, I had exposure to people with disabilities who were older than me on a regular basis.  One of the athletes I met was Scott.  He was 26, has Muscular Dystrophy, was newly married and owned his own business as a graphic designer.  Instantly I was intrigued.

As the months went by and I got to know Scott, I began to ask him questions and share some fears I had about having a disability.  Could I hold a job?  Date? Get married?  Have kids?  Have a nice social life?  What is the best way to respond to people who are clearly uncomfortable around my disability?  Scott heard it all.  He listened, guided, and offered all kinds of support.  We saw each other every Saturday at wheelchair soccer practice.  We talked on the phone sometimes as well.

In one such conversation, he asked me an interesting question.  “Hey kid,” (He hardly ever called me by my given name.) “If you didn’t have a disability, would anything in your life be different?”

I didn’t hesitate.  “Yeah, I would be a dancer.”

He was not surprised, but he asked me to tell him why.

“Dancing is graceful,” I said with conviction.  “Dancers use their bodies to create beauty.  I can’t do that in my current circumstances.  A wheelchair, crutches and leg braces are all awkward and bulky.  They are functional, not beautiful.  But there is more to it than that.  Dancing is something that I can’t do, it feels out of reach because of my disability.  Sometimes I would love it if I could just let go and dance.”

In terms of sports, my passion was track.  Every day after school, I would work out with the head football coach.  Over time I got stronger and my speed circling the track increased.  Things got even better when, as the result of some fundraisers, I got a state of the art wheelchair to use when I was competing.  My favorite event was the 400-meter dash, and after my junior year in high school, the time that was a personal best for me was only a few seconds slower than the world record at the time.

In August of that year, we traveled to Michigan State University to participate in the National Cerebral Palsy Games.  They were a big deal.  It was there that I was hoping to qualify for international competition; what would be the equivalent of the Paralympics today.

Shortly after we arrived at MSU, Scott and I went to see the track.  I remember feeling like I might have been in a washing machine too long and had shrunk as we had traveled from Texas.  The enormity of the track and the stadium caused nerves to play hop scotch in my belly.

A couple of days later it was time to see what I could do.  And the nerves were so at home within me after showing up a few days before that they were probably eating popcorn and watching cable on race day.  Thoughts of the race were secondary as questions swallowed my concentration.  What if I didn’t do well?  Would I be letting down everyone who supported me?  Would the head football coach think he had wasted all his time with me?  If I didn’t qualify for the international competition, what was I going to do?  I couldn’t turn my thoughts off.  I wanted to scream simply to release some tension.

Finally, it was announced over the loud speaker that the 400-meter event would be starting soon.  Scott came over to talk to me for a minute before I made my way to the starting line.

“Hey Kid, I know you are nervous.  Don’t think about anything but the race and getting across that finish line as fast as you possibly can.  You have worked hard to get here.  Now go do what lots of people don’t think you can.  Go dance.”

For some reason, the words hit home.  By the start of the race, I wasn’t nervous anymore.  My best effort qualified me to represent the United States of America at the International Games for the Disabled.

I think about Scott often these days, and keep up with what he is doing.  We also touch base occasionally.  (Thanks, Facebook.)

And for more than 30 years, whenever nerves play hopscotch in my belly or completing a task seems like it is too far out of reach, I remember his words of advice.

Go Dance!

 

 

 

 

Posted in America, CP, Disabilitiy, Disabled Sports, Good Memories, high School | Tagged , , , , , | Leave a comment

Why It Matters

why-it-mattersThere were several videos I watched about the protests.  I was fascinated.  10 protesters with disabilities from the Colorado chapter of ADAPT (a disability rights organization) sat in the lobby of Senator Cory Garner’s office for 59 hours (In those 59 hours many laid on the floor and didn’t respond to questions. They called what they were doing a die-in rather than a sit-in because that is what would happen to many people with disabilities if they lost their Medicaid coverage.)  The protesters were asking to meet with the senator to talk about their concerns over the health care bill, that he helped to draft.

After two and a half days, the protestors were all arrested and nine out of the ten sat in jail for another thirty hours waiting to be processed.  While they were being taken away, all the protesters were chanting that they would “rather go to jail than to die without Medicaid.”

One video, in particular, stood out to me.  In the middle of the protest, a cop asked all the people with disabilities what they were protesting.

“Cuts to Medicaid” they responded.

“So, you are protesting just for people with disabilities then?”  The cop asked.

“No,” one woman who used a wheelchair said adamantly.  Then she asked the cop an interesting question.

“If you were shot in the line of duty next week, and rendered a quadriplegic who needed the assistance of a ventilator to breathe, would the police department pay all your medical bills for the rest of your life?

“I don’t know.” The cop responded honestly.

“Well, if you don’t know the answer to that question,” the protester said; “then we are protesting for your well-being also.”

On the day the health care bill was released, about 50 members of ADAPT protested outside of Mitch McConnell’s office in Washing ton D.C.  As they were being arrested and literally dragged out of their wheelchairs and carried away, they were chanting, “No caps!  No cuts!  Save our liberty!

Both of these protests made national news.  There continue to be many more protests by members of ADAPT around the country.  And I have to say that if I were to ever get arrested for anything, I would probably consider it an honor if it were for an issue like this.  Fighting for my livelihood.  Fighting for my life to remain as I know it, for me and for others like me.  Fighting for life, liberty and the pursuit of happiness.  Those things are worth getting arrested for.

Many people in the last few days have asked me why this health care bill would be so devastating to people with disabilities, and why I consider what the ADAPT protesters are doing to be absolutely heroic.   For most, Medicaid is what pays the salaries of caregivers.  And without caregivers, some people cannot get out of bed in the morning.  Some cannot dress themselves.  Some cannot drive. Some cannot bathe independently. Medicaid is the only insurance provider in the country that pays the salary of caregivers for people who need that kind of assistance.

Home and Community Based Services, which is the program under Medicaid that pays for caregivers, and enables people with disabilities to live in their communities,  is a program that is optional, and not required for Medicaid to cover.  If there were massive cuts to the Medicaid program, it would be the optional programs that would be eliminated first.

With caregivers in place to help do all those daily care things, people with disabilities can live in their own homes, be employed, pay taxes and be active in their communities.  The alternative would be living in nursing homes, where a person does not have a choice about what time they want to eat their meals or what way they prefer their laundry to be done.  Those are some things many people don’t think about and often take for granted.  For some people with disabilities, those little things mean freedom.

I’ve said it before.  In my opinion, the way to give people with disabilities dignity is to give us choices.  If our choices are taken away, then we simply become something to be dealt with and we lose our humanity.

adapt_1007But this issue has never solely been about people who were born with a disability.

According to a recent episode of the Rachel Maddow show, Medicaid covers half of all births in this country.  “Therefore,” Ms. Maddow said, “If you have ever had a baby or had a partner who has had a baby or heck if you have ever been a baby, you should care about this issue.”  Medicaid also covers 30% of all adults with disabilities in this country and 60% of all children with disabilities in addition to 70% of all children living at or below the poverty line in America.  The quality of our lives matter.

Let me repeat that. The quality of our lives matter.

One of the things I have said often is that disability has an open enrollment policy.  Anyone is a slip on the ice or a car accident away from having their lives changed forever in a split second.  Disability issues also get more prevalent as people go through the aging process.  Many people from all walks of life might need the assistance of Medicaid at one point or another.

Because I am a member of various disability groups on Facebook, I have seen countless videos in the past few weeks of people who eloquently describe the impact Medicaid has had on their lives.  One man became paralyzed after he was bitten by a deer tick on a camping trip several years ago.  Doctors were able to save his life, but not his ability to move.  He is paralyzed from the neck down.  That kind of thing could literally happen to anyone.  It is Medicaid funds that pay for his caregivers who help him get up and go to work every day.  He works full time and makes a good living.  He pays taxes.  Without the support of his caregivers, he would not be able to hold a job.

Another man had been diagnosed with cancer of the voice box three years ago.  It was only because of the Affordable Care Act (which qualified him for Medicaid) that he was able to have the surgery that ultimately saved his voice and his life.

Why do these protests by people with disabilities matter so much?  Because many people with disabilities would literally die without the Medicaid services they receive.

And some day, so could you.

Posted in Ableism, Advocacy, America, choices, Disabilitiy, inclusion, Medicaid, National ADAPT | Tagged , , , , , , | Leave a comment

In My Own Home.

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

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

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

Life got in the way.

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

Medicaid paid for it all.

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

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

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

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

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

I want to live happily ever after.

In my own home.

 

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

This Is My Truth…

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

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

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

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

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

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

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

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

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

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

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

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

My disability does not make me incapable.

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

This is my truth.

 

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