My Secret Weapon

Image may contain: one or more peopleI first heard of the concept from my mom, who was raised in Ireland as a young girl. She told me that when people there were hiring a new housekeeper to clean their home, one of the things they would do was put a broom in the doorway. It was kind of a test. If a candidate for the housekeeper job stepped over the broom, then the family wasn’t interested in their services. If, on the other hand, people who were applying for the job took the broom and asked where it went, or picked it up and started sweeping the area in front of them, then the employer knew they had a potentially good housekeeper.

My dad used to be a manager in sales. When he was hiring new employees, he used to leave a key on the floor for the same reason. If a candidate picked it up and asked if it belonged to anyone, then he knew both that they cared and that they paid attention to detail. He would also have his receptionist try to make conversation with anyone who was waiting for an interview. If they were pleasant and took the time to say hello and engage in a chat, they were much more likely to be hired for the job that they were seeking.

In the last few months, I have had more caregiver interviews than I have had in the last several years. I have spent a long time honing my interview so that I ask questions that will give me a good feel for how a person will do working this job. Do they seem squeamish with the idea of personal care? Do they not like the idea of taking turns being on call at night? Are they uncomfortable with the idea that I am so dependent on other people for a large part of my livelihood? All of that is okay, it’s just that if any of those things are true then it is probably best that they don’t work for me.

There are other things I look for as well. Do the people that I am interviewing make eye contact with me? Do they interrupt me frequently when I am trying to explain the details of this job? (I make a point to tell everyone before we start the interview that I will tell them everything the job entails first, and then I will invite them to ask questions later.) Do they seem to be taking the things that I say seriously? Sometimes people laugh inappropriately throughout the interview, and that can be pretty creepy. On rare occasion, there is a person who goes through the interview process who makes me feel uncomfortable, and I decide not to hire them because I don’t know if I would be comfortable being alone with them in my house, let alone having them help me in and out of the shower and getting dressed and such.

Many times, part of my decision making process when it comes to whether or not to hire a specific caregiver is influenced by the feeling in my gut. I have been hiring and managing caregivers for the past 32 years and at this point, the feeling in my gut as to whether some particular person will work out or not is usually pretty accurate.

Every once in a while I interview a caregiver candidate and their impression on me was just average. In those scenarios, it is sometimes hard for me to determine whether I should hire them or not. It could work out. Or it could be a disaster. And I have had it go both ways in the past.

In those situations, I pull out my secret weapon. Leah.

My black Lab service dog loves everybody that she meets, and if she is allowed to she will sniff and snuggle with a stranger until they call her a friend. With everything she has been through, she has never lost a drop of adorable, and most people cannot help but smile after they have spent about five minutes with her. In my opinion, Leah’s presence makes everything better.

So if I am having trouble determining whether a candidate that comes for an interview will be a good fit for this job, I watch how they interact with Leah. If they ignore her or think that she is a bother, they should probably work elsewhere. But if they make a point to pet her and say goodbye as they are leaving, chances are that I will them offer the job, because they have their priorities straight.

In many ways, Leah is my sister. My partner. My best friend.

She is also my secret weapon.

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Posted in caregivers, communication, Disabilitiy, Dogs, service dogs | Tagged , , , , | 2 Comments

A Person First

 

person first language

I love this cartoon. Props to the artist who was this creative.

I first heard about person first language when I was in graduate school. The concept was familiar to me long before that. The idea that it was much more respectful to refer to “the woman who was blind” rather than “the blind woman” just made sense in my mind. Other people with disabilities disagree with me on this point and many others and I think that is okay. I will always support any person with a disability doing whatever works for them. But I never want to be “the wheelchair girl” as I have been referred to on occasion. The reasoning behind person-first language is something I have explored on this blog several times before. That people are infinitely more than their disabilities and whatever issue they may be affected by is simply a characteristic of who they happen to be as a person. And that they are a person before they are a disability.

 

Earlier today I heard of the death of Stephen Hawking, the amazing physicist who initiated major advances in the field of science. Nobody would argue that he had a brilliant mind. Always studying and questioning theories, always discovering new things. A distinguished professor at Cambridge, he was diagnosed with ALS at the age of 22 and stunned the medical community by living with it for the better part of the next 40 years. But I expect he will be more remembered for his two bestsellers and his contributions as a cosmologist than anything else.

Itzhak Perlman is a world-renowned violinist. He was diagnosed with polio at the age of four. In an interview with the Wall Street Journal about three years ago, (the quotes from the article are paraphrased here) he talks about, in the beginning, people didn’t listen to his music. Instead, they only focused on his disability and wondered things like if he could travel and if touring might be too much for him. As people started recognizing his talent, there were write-ups in the press about what a talented musician he is “in spite of his disability” and comments about people being impressed with all he has accomplished “given the obstacles he has had to overcome.” He quickly dismisses that kind of feedback saying, “That’s bologna! If I didn’t have musical talent, I would not have pursued the career that I did. What I find interesting is that when I was starting out, the only thing people wanted to talk about was my disability. As my career progressed, people didn’t talk about it anymore. But in recent years I wanted to talk about it. I wanted to talk about accessibility and how society could relate to people with disabilities. So I asked the reporters who were writing stories about me to mention it. Things had truly come full circle.”

When we remember Christopher Reeve, does most of society see him in a power wheelchair unable to breathe without the assistance of a trach tube or do they see a superhero coming out of a phone booth on the way to rescue Lois Lane?

When we remember Franklin D. Roosevelt, does most of society think about the president who led the country through the Great Depression and World War II and who launched the New Deal? Or do they think about the polio that left him unable to walk and the way his staff and some of his family surrounded him in public so that nobody was aware of how weak his body was?

When people describe Temple Grandin, do they stop at the fact that she has autism? Or do most also mention that she has a Ph.D. and is a professor of Animal Science at Colorado State University, as well as having written several books about being on the spectrum? By doing so, she has given many parents a better understanding of their children.

When Tom Cruise comes to mind, do the young women of the time think about the fact that he has dyslexia, or are they more likely to blush remembering the scene in “Risky Business” when he danced around the living room in his underwear and socks?

Do most people think of Bob Dole as a former senator or a soldier who sustained massive injuries in World War II and as a result, has limited use of his right arm?

Do we remember Michael J. Fox first and foremost as a guy who has Parkinson’s Disease or do we remember him as Alex P. Keaton on Family Ties, the intelligent older brother who occasionally let the world see his human side?

None of the people have accomplished what they did “in spite of their disabilities.” Instead, I believe that they did what they did because they had big dreams and the talent to pursue them.

People first language is something I wholeheartedly believe in. Whatever condition or disability that someone may be affected by, in my mind, they are people first. Why is this issue so important to me personally? Referring to people with disabilities as people first is a way of retaining their humanity, and not making their disability bigger than it is.

Rest in Peace Stephen Hawking. You will always be a person first.

 

 

 

Posted in Ableism, cerebral palsy, Christopher Reeve, communication, Disabilitiy, disability etiquette, empowering language | Tagged , , , , , , , | 3 Comments

I’m Not Afraid to Fight

WeCanDoItWhen I was about three years old, my family moved into a new house. One summer day a few months after we settled in, my brother and sister were playing at the end of the driveway.  I wanted to see what they were doing, and so with shorts on and no socks or shoes, I crawled down the concrete and gravel to see what was going on. Apparently, by the time my mom got to me, the lower half of my body was a bloody mess, but I wasn’t crying. My being included had been more important than the pain. I was determined to do what I thought I had to do, and that day I fought hard for it. Several adults in my life have told me that I was a tough little girl. Hopefully, that grit followed me as I grew.

Because of certain circumstances I have been dealing with in the past few months, I have been thinking often lately about how I define myself, as well as how other people see me. Some ways people see me are obvious. What I hope most people see is that I am compassionate. Although I am by no means perfect, I try to offer a specific kindness to at least one person every day. And I am happy that I can say that because of how much I care for other people.

But if I were to define myself in more specific terms, one of the first words I would come up with is that I am a writer. For the past 814 days, I have written at least 750 words. That streak is still going strong, with no end in sight. Finding people to profile for the Hometown Heroes column at Lawrence Magazine has been one of the joys of my last few years. Seeking out others who do good just for the sake of doing good reminds me that there are people who are making a positive impact on the world, and that fact helps tremendously on the days that are less than stellar. Over the past few years, Chicken Soup for the Soul has accepted several of my stories for publication, thousands of people have read my blog and in the past eighteen months working on my book has fuelled my passion to break down barriers between those with disabilities and those without disabilities. That desire gets a little bit stronger with each passing day. It is my belief that people with disabilities are the most underutilized resource that this society has. There is only good that can come out of more people being empowered.

I am also an advocate. It wasn’t until I was working on my Master’s degree in Rehabilitation Counseling that I understood in my soul that, as an individual with a disability, I have a unique voice. And it is my responsibility to let people in power know what I need and to protest when my rights are not being respected. I will never forget being part of the group that was protesting the Greyhound Bus Company decades ago when they had a policy that people with disabilities were not permitted to ride the bus alone. Me, along with many others with disabilities chanted “We Will Ride!” thousands of times outside the bus terminal. I was interviewed on the evening news holding a sign that said: “Wheelchairs Can Only Take Us So Far.”

These days calling senators and representatives is something I do on a weekly basis, as well as routinely having conversations with local elected officials about how some policies of government programs are negatively affecting my life. I give testimony to Lawrence City commissioners asking for accessible sidewalks in my hometown so that one day I will be able to go downtown and get a cheeseburger, without having to ask for help from anyone. And it has only been recently that I have made a habit of asking people to sit down when we talk so that we are at eye level. That always makes me feel like more of an equal.

But on this International Woman’s Day, I celebrate that I am a woman. Although I will always feel more comfortable in sweats than fancy dresses both physically and emotionally, I support equal rights and equal pay and I am proud of the potential changes that will come as a result of the #Me Too and #Time’s up movements. Woman have had to be silent for far too long. I’ve had a guy tell me once that I was only going to get a job because I was “disabled and female so [this man] was sure somebody would feel sorry for me.”

Last January I went to the Women’s March in Topeka. I saw thousands of woman (and the men who supported them) stand in solidarity for all kinds of issues. And what I witnessed gave me strength because it made me see that there were many people around me who were concerned about the same kinds of issues that I was. It all meant that I was not alone.

So as issues continue to come up with me I will do all I can to use my voice, both verbally and in written form to increase awareness and advocate for equality and inclusion.

Because that tough little girl grew into a woman who is not afraid to fight when I have to.

Posted in Attitudes, compassion, Disabilitiy, inclusion, negative perceptions, overcoming challenges | Tagged , , , , | 2 Comments

I Just Don’t Do Well…

electrical outletThe weird thing was it wasn’t throughout my whole house. On a Saturday morning a few months ago, I noticed something strange soon after I woke up. There was no electricity in my bedroom or my office, but the rest of the house was fine. At first, I thought it would be a simple fix. Fuses have certainly blown before. The problem is, the box is in my storage shed outside and it is too high for me to reach. Complicating the issue was that I didn’t have any caregivers scheduled for the day and that a caregiver had inadvertently broken my phone a few days beforehand, losing my contact list in the process. The phone numbers of my handyman and friends who might have been able to come over quickly were not etched in my memory. I had a new phone on that day, but not really any way to get ahold of anyone who I thought could help me.

One of the few phone numbers I know belongs to my friend Andrea. After calling and explaining my predicament, she agreed to drive to Lawrence from Lee’s Summit to try and figure things out. (She’s the best!)

When she arrived and fiddled with switches, it was determined that the problem was more serious than I thought. Her father-in-law, a retired electrician, could not find a solution to the problem and suggested we call another electrician. Because it was a Saturday, doing so was going to be expensive, but in trying to push my panic aside I realized that my bedroom has my CPAP machine for my sleep apnea as well as the charger for my electric wheelchair. Obviously, my computer is in my office and I use that several times per day. Furthermore, I had a story due for Lawrence Magazine in a few days that I had not quite finished yet. I needed everything to be working. I decided to have a guy come out who could fix the problem. I don’t do well when I don’t have any power.

Even though I might have shared this story previously, it’s worth retelling in this post.

A few years ago, I hired a new caregiver who was still learning the ropes. During one of her first shifts, I explained, as I always do, that it was important to give me as many choices as possible. Because I am dependent on so many people and I can’t even get myself from place to place, it is vital that I get to make decisions every chance that I get. Doing so makes me feel less helpless and that I have more control over my own life. And when people take my power away, they are essentially hurting my soul, because they are taking my dignity from me as well. This caregiver said that she understood what I was saying and that she would do what I asked. Most caregivers tell me that giving me choices is not difficult. It’s mostly about mindset. So, they call me from the grocery store if there are several options related to an item I said that I wanted. Or they ask me what shirt I want to wear after they ask me if I want to put on short or long sleeves.

Later that day the rookie caregiver drove me to a physical therapy appointment. While I was in my session, she was going to get a few things at the grocery store and then pick me up and take me home. I was all stretched out and after we had gotten me back in the car, she said, “I know we are supposed to have a scheduling meeting on Sunday at 1:00, but I decided that time wouldn’t work for me. So, while you were in physical therapy I called all your other caregivers and we decided to have the meeting at a different time. It is all set up.”

All of these people were supposed to work for me. When I tried to protest, she said: “Nope. It is all done. We are having the meeting at the new time.” The fury and helplessness burned in my belly to such an extent that I could not say a word. That caregiver didn’t last very long.

My first book “More the Same than Different: What I Wish People Knew About Respecting and Including People with Disabilities” is coming out in May. One of the most important things it says is this:

If someone were to ask me if there was just one thing they could do to be the most respectful toward a person with a disability, my answer would be this. Give as much power as you possibly can, and be mindful of not taking my power away from me in any situation when it can be avoided.

I just don’t do well when I don’t have any power.

Posted in Ableism, boundaries, caregivers, Disabilitiy | Tagged , , , | 2 Comments

Don’t Blame His Mental Illness

stop-the-stigma-of-mental-illnessI have made a point not to write much about gun violence on this blog so far. There has been plenty of opportunities. After Sandy Hook. After Las Vegas. After three people died of gun violence in the early hours of the morning in downtown Lawrence a few months ago, which is just a few miles from my house. When these shootings occur, I tend to get quiet. To give myself time to grieve. For the loved ones left behind. For the victims robbed of their futures. For those of us who will never get to know them personally. We are missing out.

And I also grieve that we live in a society where this kind of thing has become all too commonplace. The tragedies at Columbine and Virginia Tech occurred many years ago, and nothing was done to prevent similar things from happening again. So they do. Over and over. I’m tired of seeing video clips online of distraught families who will never be the same or of the survivors who are trying to figure out the process of putting their lives back together. This has to stop. It just has to stop. I believe in my soul that kids should be able to go to school, or people should be able to go to church or a nightclub or a movie or enjoy a concert without worrying that they will get shot and killed while trying to do so.

Now seems to be the right time to talk about an issue that has always bothered me when it comes to these tragedies, although I have seen several posts about it in the last few days. Media coverage describes some physical and factual characteristics of the shooter, and typically the description ends with, “and he had been treated for a mental illness.”

I have said for years that I am tired of the stigma that mental illness has in our society. I have a diagnosis from the DSM V and sometimes I struggle with my symptoms. But I never plan on killing anyone. I would venture to guess there are few people who do.

Since I don’t have cable, there have been some years when I have gone over to friends’ houses to watch the Superbowl. Every other commercial seems like it is about erectile dysfunction. If society can talk about that subject without batting an eye, I don’t understand why some people look like they have to go to the bathroom when I let them know that I have a diagnosed mental illness. It has gotten to the point that I don’t talk about it much anymore. In my experience, it is just one more thing that makes people see me differently. So, for the most part, I only talk about my diagnosis with professionals.

Nikolas Cruz didn’t kill seventeen people in six minutes at a high school in Florida on Valentine’s Day because he had a mental illness. He did so because he had uncontrolled rage. I know the background. He was expelled from the same school last year. His mother had recently died. He had previously been reported to the FBI. But those details came out later. His treatment for mental illness was mentioned early like mental illness was an explanation for what he did. Which isn’t true. I believe that anyone who thinks it is okay to walk into a school with an AR-15 and start killing people has major problems. I just don’t believe that it is okay to put this killer in the same category as everyone else who is affected by a mental illness.

Many new moms are affected by postpartum depression. If one wanted to get technical, that is a diagnosable mental illness. So is bipolar disorder and schizophrenia and people with Post Traumatic Stress Disorder, and OCD and many other treatable ailments. And yet with the right supports in place anyone affected by any one of these conditions can lead productive and fulfilling lives.

Where did we as a society lose our way and decide that mental illness as a whole was something to fear? One of the things I have said to the people around me often is this: If people don’t blame me because my cerebral palsy prevents me from being able to go outside and climb a tree, they cannot blame me for the times when I exhibit symptoms of my mental illness. Neither disability is in my control and I manage in the best way that I know how. I don’t know anyone who would choose this.

Be angry with Nikolas Cruz for his actions. Don’t blame his mental illness.

 

Posted in America, cerebral palsy, Disabilitiy, Mental Illness, negative perceptions | Tagged , , | 2 Comments

We Can’t Do This Alone!

We Carry KevanA few days ago, a friend of mine sent me a video. (Thanks, Beth!) It profiled Kevan Chandler, a young man who is a wheelchair user because he is affected by Spinal Muscular Atrophy. Kevan loves to travel, but because of his disability, he was limited to only going to places that were wheelchair friendly. That is until recently.

Some of Kevan’s rather ingenious friends put together a makeshift backpack that Kevan can sit in. His friends take turns carrying him wherever he wants to go on their backs. Recently the group traveled through Europe, to England, Ireland, and France. Kevan was included in everything. He saw the same sights his friends did, without the limits of inaccessibility. The same group will soon travel to China.

A few days after I saw the video, in a 225 to 192 vote, the United States House of Representatives passed H. R. 620, the ADA Education and Reform Act. According to an article in Newsweek, the bill would effectively gut the Americans with Disabilities Act that was passed in 1990, by giving businesses 60 days to devise a plan to fix the problem and another 120 days to implement what it would take to get up to ADA standards. More succinctly it gives businesses that violate the ADA in terms of access a six-month “notice and cure” period before they can be sued for ADA noncompliance. Proponents of this bill say that it will stop the random drive-by lawsuits that some unethical lawyers file when they see a business that is not accessible. Disability advocates like myself cry “foul” and fear that this bill will give business owners an excuse not to make their places of businesses as accessible as they should be. There is less of a fear that businesses will be sued at all. The Americans with Disabilities Act has been a federal law for almost 28 years.

Representative Jim Langevin, the first member of the House of Representatives who is a quadriplegic, vehemently gave testimony opposing this legislation. He was injured by a stray bullet in 1980 when he was just 16 years old, a full 10 years before the ADA was passed. In his testimony, he says he remembers the days before the ADA when he was excluded from restaurants, movie theaters, and sporting events when the venue was not accessible. He went on to say that this bill “unravels the core promise of the ADA, that a disability, visible or invisible, can never be grounds to justify or tolerate discrimination.” He reminded his fellow representatives that the ADA “brought hope, dignity, and opportunity to people with disabilities.” He concluded by saying that people with disabilities, including himself, are tired of defending ourselves against efforts to weaken our rights and that this legislation turns back the clock on disability rights in America. And I unfortunately agree. A watered-down version of the ADA feels like the House is telling people with disabilities that they need to sit at the back of the bus or that there should be separate water fountains for us to drink from.

As always, people from ADAPT, the grassroots disability rights organization were there right before this vote was taken. People who are blind and deaf and use wheelchairs and have a whole host of other disabilities were up in the gallery of the House of Representatives literally shouting “Don’t take our rights away!” They were all arrested for their efforts.

According to Rachel Maddow, the reason that most Americans are totally unaware of this bill is that there are no politicians that campaign and say “Send me to Washington, I am going to stick it to people with disabilities. They don’t want to brag about this to the people back home. They like to do these things quietly.”

Maybe that explains why there was not much media coverage of this issue.

Of his travels in a makeshift backpack, Kevan Chandler says “We redefined accessibility. Everything became accessible because we did things differently.” I think it is interesting that I had that same thought in the summer of 1990, in the weeks following the passage of the Americans with Disabilities Act.

Many times I have said that disability has an open enrollment policy. Anyone is a slip on the ice or a stroke away from being in the same position that I am in. Life can change forever in a split second.

Mr. Chandler goes on to say, “We can’t do this alone. Whether it is a trip or it is life, we need each other.” Kevan had his good friends carry him on their backs through several European countries. Their efforts enabled him to go places that he could not have gone on his own. And he is right. We need each other.

Please, friends, when the time comes, call your senators and urge them to leave the Americans with Disabilities Act intact. In my opinion, inclusion and empowerment are essential for people with disabilities to thrive.

We can’t do this alone.

 

Posted in Ableism, Advocacy, America, Disabilitiy, Discrimination, Friends, inclusion, Politics | Tagged , , , , , | 1 Comment

Every Single Time.

valentine's day heartsHappy Valentine’s Day Eve. Or as I like to call it, Single’s Awareness Day. It used to be that I was among the cynical about this holiday, thinking like so many others that it was an occasion invented by Hallmark cards, Hershey’s chocolate and every flower shop in the country. In fact, I knew some girls in college who would actually base their self-esteem on how many guys called to wish them a happy Valentine’s Day every year. That kind of thing just isn’t my scene. Not even remotely. I don’t see how receiving a gesture of kindness on Valentine’s Day makes that act of kindness more special than it would have been on any other day. But that is just me.

As I have gotten older, my perspective around Valentine’s Day has changed a bit. Now, instead of seeing it solely as a day where some people get to be romantic and sappy, I think of it more as a day when people can express care for one another. Even though I would be among the first to say that I hope that people express their care to the special people in their lives every day, I think sometimes it is especially important for people who are single.

I will admit that there are not as many people in my life as I wish there were. Sometimes it would be great to have somebody to go and have lunch with or who could really take care of me when I am sick. I would love some company when I go strolling on the bike trail, and it would be great to have someone in my life who just does social things with me. Sometimes I wish I had someone to talk to about my day besides caregivers who are being paid by the hour.

Don’t get me wrong, I love my caregivers, and I sincerely appreciate all that they do for me. I could not thrive without their support. It’s just that the conversation is a little different when I talk to them then it is when I have a conversation with someone who is just a friend of mine.

But being single also has its advantages. It means that I can eat chips and salsa or chocolate chip cookies for dinner and nobody will judge me. (Leah, my service dog, and I have an understanding. I don’t tell her that her kibble looks disgusting and she refrains from judging what I eat.) Being single also means that I don’t have to “compromise” with anyone for the last piece of cheesecake in the fridge or deciding what movie I want to watch on Netflix. I can stay up all night reading a book without disturbing anyone. (Leah can sleep through anything except someone opening a jar of peanut butter.) And I like all of that. There are simply some things that I wish I didn’t have to handle on my own all the time. And I am keenly aware that in most situations, I am the only one who will advocate for what I need.

In being single, there is an “aloneness” that is hard to articulate. I don’t mean that every single person is depressed or even wants to be part of a couple. I just know that in my life of singleness, I have had several moments of that “it’s me against the world” feeling. It can be incredibly empowering. Especially when I accomplish something that I set out to do all on my own, the win is something that is uniquely mine, and nobody can take that away from me. That feeling can also nudge me to acknowledge my independence and celebrate achieving something that I couldn’t do yesterday. The other side of that though, is that I don’t have someone who can “take a look” at a moment’s notice when my kitchen faucet starts dripping or a screw or bolt on my wheelchair wears out and needs to be replaced.

So I will spend tomorrow looking at scores of Facebook pictures of hearts and flowers and posts full of romance and affection. And I will enjoy them. Because love around me is positive no matter what form it happens to take.

I would just encourage everyone to also remember tomorrow those in their life who aren’t part of a pair, whatever the reason may be. Make a call. Stop by for an unexpected visit. I can tell you that those kinds of gestures can make a significant difference in my perception of my day.

Every single time.

Posted in Disabilitiy, Friends, loneliness, Love, Romance, Wheelchair | Tagged , , , , | Leave a comment