Are We Really Inspiring?

Or are we just living lives?

That is the question posed and challenged to you in a video that ended up in my inbox last week. The answer is articulated beautifully by comedian and disability activist, Stella Young in a recent TED talk. This nine minute talk may challenge the way you look at people with disabilities and this whole notion about whether we’re inspiring or not. And that is a very good thing!

Stella captured what I have been thinking about for years now. Are people with disabilities viewed as typically inspiring for simply living pretty ordinary lives? Is it somehow inspiring when we grocery shop, pay bills, or go to work? If so, why?

“Because we have been told a lie about disability,” Stella says. “The lie is that disability is a bad thing and to live with one is exceptional.”

I love that statement. It so ties into I give on Releasing the Myth of Disability, which essentially teaches people to develop an awareness of the false societal belief that disability is a horrible fate. Stella claims (rightly so) that many people have a tendency to look at people with disabilities and think, “No matter how bad it is for me, it could be worse.”

There is so much teaching to be done to flip this attitude around and let society know there is joy and peace in living with a disability. Sometimes this serenity comes from the very fact we are different, that we don’t easily “fit in,” and we’re just fine with that. There’s also a lot of education needed about how people with disabilities often just lead ordinary lives and there’s nothing exceptional about that.

As I had the idea for this post rolling around in my head and was taking my evening walk with my son, who is still in a stroller, a man stopped along the trail to say to me, “I see you walking him (my son) here quite a bit and I got to tell you how inspiring you are.”

I thanked the man. I was not necessarily offended because I could tell the compliment was from the heart. He even touched his heart as he spoke to me. My belief is that if I can touch people’s hearts, then that’s the doorway to changing beliefs and attitudes.

After I thanked the man, I said, “Well, I have to get my exercise in somehow.” What I thought was how I was just doing a very ordinary thing – exercise – because heart disease does not discriminate against disability….and that I love this life of mine with a disability and want to keep living it for another 45 years!

Enjoy Stella’s talk, I’m not your inspiration, thank you very much; it’s so worth the nine minutes. Take her up on the challenge to question what you think you know about disability.

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Why Maya Angelou’s Work and Life Speaks Volumes to People with Disabilities

Last Wednesday, I listened to a news segment about the life and death of literary genius and civil rights activist Maya Angelou with tears rolling down my cheeks. I was not surprised by this, despite her books still being on my “To Read” list. I have been familiar with her work for years, though, and she always caught my attention in the media and of course, at Presidential Inaugurations.

Maya always struck me as a woman that radiated beauty and grace. I strive to be like her. It was not until Wednesday, the day of her death, that I realized why she had always struck such a cord with me. Maya’s life story of rising above the abuse, trauma, and pain of her past speaks volumes to beautiful process of finding one’s own sense of empowerment and ability to tap into one’s gifts.

Despite all the abuse and instability in her childhood, she stayed true to herself and believed in herself, perhaps when no one else but her beloved brother did. She then took that belief in herself and her gifts and rose to greatness.

Maua’s story inspires us all to find the greatness within ourselves, despite how daunting it may seem at times. Living with a disability is about acknowledging the challenge, the hardship, and then saying to oneself, “How can I rise above this?”

In these moments, you may also want to check out Maya’s poem that embodies empowerment, And Still I Rise. The entire poem resonates with me as someone who has struggled at times against being judged and excluded for my disability. Here’s the two excerpts that speaks the most to me about rising above the challenges of a disability:

You may shoot me with your words,
You may cut me with your eyes,
You may kill me with your hatefulness,
But still, like air, I’ll rise.

And….

Out of the huts of history’s shame
I rise
Up from a past that’s rooted in pain
I rise
I’m a black ocean, leaping and wide,
Welling and swelling I bear in the tide.

Leaving behind nights of terror and fear
I rise
Into a daybreak that’s wondrously clear
I rise
Bringing the gifts that my ancestors gave,
I am the dream and the hope of the slave.
I rise
I rise
I rise.

May YOU rise and shine as gallantly as Maya.

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The Best Dating Advice

Don’t give him your number, he needs to have the “full effect” of you.

I was visiting a friend, describing my latest attempt to try the whole online dating thing, when she gave me this counterintuitive, wise advice. I had just been explaining to her my concern that many men would unfortunately hear my voice on the phone, which is accented by my cerebral palsy, form a judgment about it, and I would probably not hear from them again. Often times, this is the harsh reality in dating with an obvious disability.

I have come to learn through this quote, life (and dating) somehow get easier once we accept the difficulty of it all:

Life is difficult. This is a great truth, one of the greatest truths because once we truly see this truth, we transcend it. Once we know that life is difficult – once we truly understand and accept it – then life is no longer difficult. Because once it is accepted, the fact that life is difficult no longer matters.
- M. Scott Peck

So I began to accept and embrace the fact that dating can be really hard and full of rejection. Please keep in mind this is true of people with ALL abilities. Once I did this, I could then problem solve.

I knew exactly what my friend meant by having a guy meet me and getting the full effect of me. He had to see how comfortable I was in my own body and with my disability. My friends often said when they initially met me, that’s what drew them to me – the ease I had in a body that was so different.

I was banking on that being true in the dating world as well. Since I was doing online dating, when a guy emailed and asked me for my number, I would write back and offer to meet him (at a public place, of course) and say something to the effect of meeting me would give them a much better idea of who I was. This would also happen only after several email exchanges, so I could have an idea about them.

My testing of this little Do Not Call experiment did not get far. The first guy who agreed to meeting me before talking to me was a lovely man, but I didn’t feel any spark there. The second, who I met a week later, ignited a spark the moment I walked into the room. That was the beginning of the end of dating experiments. We married two years later.

If you have a disability and are concerned that someone just talking to you on the phone will form a judgment about you without allowing themselves the honor of getting to know you, take a risk. If you want meet them, have them get the full of you. It may pay off big!

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Dating 101? No just some tips!

I want sex.

Knew that would grab you.

I have heard that statement in one way or another from almost ALL of my clients in my nearly 20 years of counseling.

Sure, who doesn’t want it?  Well, maybe  someone who’s eight months pregnant may not care for it. But then there’s the rest of us.

Do I really have to say that people with disabilities are no exception to this?? Yes, they clearly want sex and a lot of it, please. Remember, I work with many men. However, what people want more than that is to DATE!

Many of the people I work with are lonely. They want friendship and companionship. They want to get to know people. They” want people to get to know them. They want to date.

Sometimes people with disabilities (and I’m sure a good share of those without disabilities!)  need some guidance in practice and process of dating. I have a gentleman I am currently working with who has been asking me for conversation topics once he makes an initial connection with the women he “meets” through online dating sites.  Since his brain injury, it’s been harder for him to initiate social conversations. It’s also been challenging for him to think about all the steps involved in getting to know someone as a potential girlfriend. So I created this Questions for dating for him. I hope you or the people you work with also find it a helpful resource!

His request for guidance, along with my desire to make this blog and my website more resourceful, inspired me to create a new category for DATING RESOURCES.  In the months to come,  I will be adding more downloadable PDFs to this category ranging from dating safety tips to sexuality issues to knowing the right person for you.

I would love to hear your comments, questions, or situations you’re dealing with in supporting people in their quest to date and develop relationships in the comment area below.

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Define Thyself and Open to the Possibilities

In the past month, I have been introduced to Success magazine, a very motivating publication for being a leader not only in the business world, but also in your personal life. As I was finishing the current issue, I came across a wonderful quote by Jason Silva, filmmaker, that also applied to what I am doing with my business.

“[The whole point of my work is] to infect people with a sense of boundless possibility.”

That’s what I want to do, I thought. Since I published Firewalk: Embracing Different Abilities, I have been shifting my focus from the one-to-one counseling I have done for years to speaking to a more general audience about disability related topics, specifically focused on empowerment and living life more fully. What I have discovered is that my individual work with people has prepared me well for sharing tips and strategies with larger groups of people.

Much of the counseling I have done with people is how to help them “adjust” to having a disability. Given I counsel primarily people who have acquired a Traumatic Brain Injury, this makes sense. The word adjust is a clinical term. I am supposed to help people adjust to their functional limitations, apply coping skills, and develop compensatory strategies to adapt to the loss of functional skills (more clinical terms, you still with me?)

In my nearly 20 years of counseling, I have observed time and time again one of the core reasons why people have difficulty adjusting to a disability is that they allowed themselves to be defined by others’ definition of who they are because of their disability, rather than defining themselves. This is true of people both born with a disability and people who acquire one along the way. Often people just define themselves by how they think others perceive them. What an exhausting way to go because you’re investing so much mental energy in what you think others think!

I always say people are forever going to think just what they want and there’s no way we can control that. What we do have a lot of control over is how we define ourselves. Here are three easy steps for doing that:

1. Check in with yourself frequently. Ask yourself whether what your feeling or thinking about yourself belongs to you or someone else. If it’s the former and it’s a negative belief, see what you can do to reframe it. If it’s the latter, dismiss it. You have your own thoughts to keep you busy, you don’t need another’s.
2. Identify three positive traits about yourself and hold onto them like gold. For me these words are compassionate, energetic, and outgoing. Say your words like a mantra, let them radiate through you so they become a solid foundation of your self definition.
3. Develop a “definition filter.” If you do step 1 and check in with yourself about something you’re thinking or feeling and it does not match your list from step 2 (or just does not feel right for what you know to be true to you), filter it out!p Remind yourself that belief belongs to someone else and not you. Therefore, it has no bearing on who you are ultimately.

Once we begin operating from our own definition of ourselves, it’s amazing how much energy and capacity we then have to see all the possibilities open up for us on what we can do with our lives. This is because by defining ourselves, we are now steering the ship.

I haven’t gotten too many comments lately. If you feel so moved, leave one below.

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Why the Gayest Year Can Help People with Disabilities

This issue has been rolling around in my head for sometime now. I have been watching and listening to the news reports, legal decisions, and most importantly, people’s views and attitudes toward gay rights. It’s definitely changing. Gay marriage and domestic partnership are being both recognized and legalized in more states. Children are more easily adopted by same sex couples. It seems like the views that prohibited these rights for gays are either weakening or hopefully, reflect an understanding more of the importance of accepting people just as they are.

In December I heard a wonderful end-of-the-year summary of 2013′s progress on the changing attitudes of gay rights. National Public Radio’s Ari Shapiro summarized the legislative and attitudinal changes sweeping through the country in the last year. From state legislatures to Congress and even to the Supreme Court, same sex rights are being recognized and finally acknowledged as basic, deserving rights.

This reflects a growing societal acceptance of gay people. One that is so long overdue. How could one of the most developed countries, as we are, ever have a hard time embracing love between two people? I, as you may have guessed, come from the school of thought, that believes being gay is an inherent part of one’s self. After all, can you explain why you’re heterosexual or homosexual? I can’t; I just know I am heterosexual.

I was in a meeting last spring discussing the challenges that people with disabilities continue to face in regards to trying to help the general public become increasingly more accepting and embracing of people with various abilities. I mentioned that I thought that we could learn a great deal from the LBGT community and the gay rights movement. I believe the key of their growing societal and legislative progress has to do, at the very core, with self-acceptance and really claiming, “This is who I am.”

In the NPR piece the reporter captures this sentiment by quoting Harvey Milk. Milk was the first openly gay person to be elected to office in California. He is recognized as an early leader of the gay rights movement, perhaps because of this philosophy:

The most important thing gay people can do is come out because once you know us, you don’t hate us.

I believe the same principle is so very true for people with disabilities. While many disabilities force us to “come out” because they are so evident, claiming one’s disability as an integral part of who one is and having a sense of pride (think Gay Pride) can go a long way in people getting to know us and seeing our value.

Throughout my life one of the most common pieces of feedback I receive from people about my disability is because I am so comfortable with it being part of who I am, that allows others to feel the same. Like gay people, once we stop resisting such an integral part of who we are and what makes us different, we can proudly claim how we don’t fit into that elusive “norm,” giving others the encouragement to accept and embrace us as we are.

There’s a lot to learn here. Keep watching the gay rights movement. Maybe some year we’ll have the Most Differently Abled Year.

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Don’t Fall….Gee, Thanks for the Reminder

I have had a particular idea for a blog rolling around my head for a while now.  It needs a bit research and time for me to put my thoughts down. My family and I are in the midst of moving this week, so unfortunately time is a hot commodity.

Thankfully, the Universe delivered some good, lighthearted material for a post the other day. The theme of this “lighthearted” substance may sound like an oxymoron – projected anxiety. You know when someone sees you and begins assigning a worry or a fear they have onto you. I have found this happens from time to time when someone makes instant assumptions about because of how I walk.

In their eyes, I appear unsteady due to my gait and that causes immediate concern in the other person.  In general, I believe people have a difficult time being with their concern and even a harder time labeling it anxiety. If people were able to do this more, they would in a better position to catch themselves and project far less anxiety onto others.

Here’s my brief encounter to illustrate my point. Over the weekend, I got a haircut at a salon I’ve been going to for years. The salon¹s in an old house so there¹s a couple steps leading to the front door.  As I’m paying my hairdresser (do they still call them that?), her next customer comes it. I say goodbye and walk to the door.

As I do, the Next Customer follows me. My hairdresser, who has a knack for totally getting people for wherever they are, says to Next Customer, “Did  you forget something?” Next Customer replies, “No, I am going to help her with the door.”

Yes, a nice gesture, but I didn¹t really the help, nor did I ask for it. Plus, her holding the door made my exit a bit more challenging because I was not able to hold onto the door as I stepped down. It just threw off what is easy for me.

Then as I am descending the steps, Next Customer calls after me, “Don’t fall.”

I know it probably doesn’t  sound like this after  reading this post, but I¹m actually not a sarcastic person by nature. I’m not as quick with comebacks as I¹d like to be. What I would have loved to say is, “Thanks for the reminder. Otherwise I would have planted my face on the cement.”

Don’t fall. Like I’m trying to? Do people think before uttering these words?  No need to answer that one. Obviously not.  I¹m usually pretty tolerant of other people¹s comments, especially when I know the person is trying to be but has their own anxiety thrown in the mix.

Statements like “Don’t fall,” especially when the person knows nothing about me except that I have a disability is just condescending.  Would that woman have said the same to someone without a disability? I don¹t think so.

I will end my rant with a plea for all people who feel uncomfortable with anyone¹s difference, check in with yourself first – is what you¹re about to say coming from a valid place or one of projected anxiety? If it’s the latter, take a deep breath, count to 10, and people see themselves to the door.

 

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Firewalk: The Trailer

While I don’t get to the  movies much these days, I do love going to the movies. One of my favorite parts of the whole “going to the movies” experience is watching the trailers before the movie.  While chances are I may never get to actually watch the upcoming movies, I love seeing the previews. But it’s more than that. As a lover of stories, I am so intrigued by how trailers tell a story in just a few short minutes. Many trailers  touch me by how they capture the essence of a story.

Hopefully, you will have that response when you take a look at the book trailer for  Firewalk: Embracing Different Abilities - fresh off the press, so to speak.  Yes, a book trailer, one of the newest ways to market a book. In this age in which we have become so visually-respondent, book publishers have decided to create visual images  to entice readers. So take a look, as always let me know of any feedback, and feel free to share!

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Keeping Up

I will be kicking off the new school year here in New York with an inservice training to the teachers and staff of Enable’s preschool program.  I was requested to do my presentation on Embrace, Integrate, Radiate, Live.  Here’s the description of the training from my website:

Kathy intertwines the core philosophy of her practice into a powerful presentation for individuals, families, and service providers. The concept of embracing one’s disability as a key component in the process of acceptance is explored, along with steps for integrating disability into self-concept. People are then encouraged to look at how they can radiate one’s gifts, talents, and abilities to the world. The presentation concludes with a discussion of how these important actions lead to living life as fully as you can.

When I created this training, I honestly did not have three and four-year olds in mind.  The thing I love about giving presentations and training to various audiences is that I am challenged to tailor each one I do to the needs of the audience. So I called the preschool director to get a feel for some of the issues the kids are facing.

The major issues he said are the struggle with  being different and keeping
up with their peers. A-ha! I was instantly taken back to being a kid -
trying to keep up with kids on the playground, with school assignments
because everyone just wrote so much darn faster than me, and getting out my
questions and stories as others patiently listened to me and tried to
understand me.

Fast forward to high school years, but before any of us could drive, and I
was forever trying to walk as fast as I could to keep up with my group of
friends as we walked from the movie theater to the pizza joint.  I was
always trying to keep up with others.

Looking back, I think the trap I fell into as a kid was equating “keeping
up” with “being good enough.”  There’s a fine line there and when we’re
constantly measuring ourselves against others, we cross the line.  We then
mistakenly believe that going at a slower pace and doing things differently
just doesn’t measure up. But who’s rules are those and why are we so quick
to accept them as truth?

Well for kids, it’s because they are so impressionable, especially at age
three and four.  That’s why they need adults in their lives who will give
them messages such as valuing the uniqueness of their pace, helping them to
focus on what their gifts are, and helping them find acceptance in whatever
their pace is.

Disability or not, don’t we all essentially move at our own pace? Think
about a major marathon, like in NYC or Boston, those thousands of runners
don’t all finish first.

Grace is bestowed on us when we can begin to accept our pace, let go of the
measuring stick, and know that whatever our speed may be, it’s good enough.
I am looking forward to helping the teachers and staff foster this belief in
the little hearts of children who have so much to offer.

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Surrendering to the Escort

Who would have ever thought that tile floors and rubbered sole shoes (my sensible mom shoes) would cause an accessibility issue?  But it happened – in the airport. I write this on the final lag of my journey home from a fantastic trip to speak at the Texas Parent to Parent Conference.

I noticed it right away. I walked through the airport doors in Syracuse and noticed it suddenly felt like I was walking on ice. I felt like I would slip at any moment. “Okay, this is probably in my head,” I told myself and kept walking. After all, I have flow and gotten myself around the busiest airports for years. However, I clearly could not walk at the same brisk pace I am accustomed to.

I kept forging ahead,  though, coaching myself like my mom taught me when she read me The Little Engine that Could over and over. “I can do this,” my inner cheerleader whispered, “I can do this.”

I continued inching along. I had planes to catch after all. Thankfully my connection involved a couple hours wait so I could carefully meander through the Detroit Airport, which seemed a lot bigger than I remembered. A few times I thought about getting a wheelchair or electric cart escort. But I can be stubborn and insist on doing things the difficult way. Baby stepping my way through the airports, I made it to Austin, thankful for the concrete once I got outside. One can’t slip on dry concrete, although I’m sure I cold figure out a way to do that too!

Less than twenty-four later I returned to the airport. It’s amazing how quickly I can forget things. I walk into the airport at my normal pace and….oh no, here we go, that sensation is back where I feel like I might fall. So I inch my way to security, thinking a little more that maybe I should ask for an escort. I find myself cheating and opening the roped off part of the security rope that creates that silly zig-zag that leads to security.

A nice security officer comes up to me and motions me to a shortcut to security, but then rethinks it. “Ma’am, could I get you an escort?” Without hesitation, I say, “That’d be great.” I realize at this point I just don’t want to forge through another day on airport floors. In the moment, as I walked so carefully through the long airport terminals, it felt very stressful to me. It took me out of the present moment and the enjoyment of my trip. I’m a person who usually actually enjoys flying.

So why not surrender to the escort? I swallowed my hard headedness and sat down in the wheelchair. The stress of worrying about getting to the gate gone, I could relax and accept the kind help of the airport staff.

Another lesson learned – stop trying to prove a point (more to myself) and enjoy the ride – literally!

 

 

 

Posted in Lessons Learned | 4 Comments
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