Dolls in Power

We have often noticed that the attitudes of the public towards people with disabilities can vary. We have not looked at our own attitudes towards the world and its impact. We haven’t looked at what we do and what we say to contribute to these unfair, intolerant, chauvinistic, bigoted behaviors. We all deal with prejudice and out moded ideas on some level or another. However, in some cases, it is far more direct and discriminatory than others. With some of us, it leads to an iron determination. Yet, in still others, it sadly leads to a desire where a person escapes into a safety net which they work, and operate the system only to run and control people, places, and things. These manipulations are very discreet, delicate, and impeccable. It isolates, all un to its self. And, it is all too easy, trouble-free, and effortless on the individual’s part. That is why it is so very simple, and easy to believe what experts say to us.

Sometimes like an over-seeer on a slave plantation, a person can carve out a small niche of power over their peers. It is simple and painless because they have no morals, ethics or emotions. They are cold and detached. They lack from feeling. Many a times in my life, I have witness first hand these unfortunate events. They take place anytime, anywhere, in any given situation. It can happen in so many different ways. We must learn to be one step ahead, as well as very in tune. It is a counterfeit for real genuine attempt’s to better one’s self and one’s situation. It is a phony, forged, bogus, sham to get something for nothing, or to take advantage of a person in a particular way, together with trying to erode someone’s good nature. The two best examples I can think of occurred years apart, in totally different situations, and at totally different times; but reflect the same idea.

In many incidents, outsiders, (persons’ or professionals’) seemed to think they have a right to control what it is “we” are trying to do, say, or accomplish with our lives. They try to get their way at all cost.

Many years ago, when I was working in a transitional center, for the disabled with Cerebral Palsy, my boss not only kept trying to alter my working conditions, but, made fun of my personhood. He made enjoyable and entertaining remarks about my disability, only to remain in complete control, and have direct command and power over me. Slowly, one incident at a time, my boss began to impose unrealistic job duties on me. He began to act in a cruel and insulting manor. He didn’t have compassion, consideration, or any kind of a sincere, kind of sensitivity; let alone an awareness of how to act towards others. He also couldn’t understand how important my work as a recreation director, and dance teacher was to me, nor, did he understand how valuable I was to his organization, the clients I worked with, or as a human being and a representative of the disabled community.

His determination for power to control me was at all cost, although, it cost him and the organization a very valuable employee, and taught them an expensive lesson. It harks back, and reminds me of another time in my life when I was bullied by a disabled girl, whom I thought was a friend. What she wanted was deceitful. Her devious, disingenuous, and false-hearted attempts only wanted my beautiful, well kept doll clothes. Again, it was the same issue and subject matter. She was convinced that she had a right to have what she wanted while being straight faced and disrespectfully witty with me. She was only fourteen years old, yet she knew exactly what she wanted, how to get it, and how to control and orchestrate the situation. Her quick and scheming mind won me over in minutes. She was so powerfully hungry, for whatever these doll dresses epitomized, characterized, and represented on a deeper level, that she would attempt anything to get her way. She was very clever, bright, and brainy. So subtlety smart- smart enough to influence and use me to profit in her own gain. She was exceptionally skillful and knew how to hunt and pray; by simply wearing me down.

This gal might have won me over that one particular day, and got the best of my doll dresses, but she didn’t get me! She helped me all the more! She taught me some significant things about myself, about human nature, and man kind. She also taught me about myself. For that I am totally beholden to her. I am grateful beyond words. These have been just a few lessons in my life. While at the same time, they have shown me what type of person I am, and what type of strengths and weakness, I possess. These experiences taught me what types of attractive qualities, temperaments, and behaviors I hold and wish to develop and build upon further. Long, long, long ago, I decided to take these teachings and turn them around. I decided to build upon the positive, even though at that given moment, I was angry, hurt, and frustrated. I decided long ago to take these lessons in stride, put them under my wing, and fly.

February is upon us once again…

Were have the days gone? It was Christmas only 2 months ago! In the hectic lives we all live and lead, we eagerly just keep turning the pages of time. The moments don’t stop for us, or for our convenience, they continually keep on ticking. Tic, tic, tic. Daily we look at our calendar’s. We look to see what we have scheduled and penciled in for that particular day.

Rarely do we stop for a second, to take a moment to smell the fragrances before us. We don’t stop to listen to the quit, stillness in the air. Still, we seldom stop to focus in on the unseen and the unspoken. We certainly don’t stop to mark or jot down those treasured seconds. We get caught up in the moment, deterring us from what’s really important to us. Too fast, the moments slip by. We forget to think about all the precious things that we are grateful, for. We forget about nice things that are said and done. Before you know it, in a blink of an eye; years and decades have past us by. Things that were once so very important to us, have melted away like the glaciers in the most high.

Now, the sweet ,sugar, coated aromas of the canopy fill the air. Red and pink pedals of roses are in plenty, and lovers will soon croon the tune “unforgettable.” The card store’s will be creeping with people hustling to hone in on the perfect card and gift. People will crowd the restaurants to celebrate Anniversary’s, birthday’s, and especially valentines day.

These celebrations are a reminder to value what is really important in our lives, which is time spent with those we love. In looking back, it is that which we remember.

Generations of Perception

Sitting in the quiet solitude of my own four walls, my mind and thoughts will gently carry me back to very clear images of my past. These vivid memories are a touch tone towards greater understanding and healing of past experiences that I have had. In a blink of an eye, it doesn’t seem real all the time that has gone by since my father’s passing and my grandmother and Uncle’s physical deterioration with Parkinson’s disease.

These three important people in my immediate circle, where products of another era. It was difficult for them to express how they felt and what they desired. But, they were all souses of life giving lessons to me whether I agreed with them or not. They were an instrument towards my understanding the generations of dysfunction and lack of hands on affection in my family, and the wisdom of a young child who saw beyond the whelm, and wanted to move beyond, and towards the light of a better way of living, interacting with others, and being harmonic within the world around me.

All of these people were viewing someone very close to them, dealing with a disability, in a time that was thought to make a normal life impossible. I was from the very beginning, determined to live as though I didn’t have the limitations of my body, or, the “crippling attitudes” of the larger society to deal with. It would never have seemed possible for me to go out into this world and thrive with the attitudes and beliefs I was brought up with. Because, most of my family; especially my mother, was caught up in the daily business of dealing with a disable child and everything that came along with it. While my father came from even an earlier generation than my mother, and he had lost his mother, and was raised by a grandmother, so his focus was on earning a living. That left little time for anything else.

I had to figure out a lot for myself because my father passed away when I was only fourteen. This was just one experience in a period of several years that I lost loved ones. This forced me to be very self reliant, confident, and interdependent. So, it was all put upon my mother to raise my older sister and myself. Although, my dear Mama Katie didn’t quite know how much I could handle, or, how to totally express herself to me or say what was on her mind; she truly understood that I needed a lot more to become the person I was meant to be.

It is hard to remember what a radical idea this was in a time of separation for our community very similar to the segregated south. My mother had to remember the balance I needed, so that I could thrive, grow and develop my inner and outer self. My mother needed to understand two great truths. First, that there needed to be time to relax, regroup, and rest. And secondly, this was even harder, I knew there were thing I needed to accomplish which she wanted to protect me from.

The first time my mother ever had the courage, the strength, and the ability to acknowledge her own error in thinking there were limits to what I could do, was the day I earned my college degree. Who would have thought, that a dysfunction so deeply rooted, could have melted 35 years of pain, hurt, and lose. I was able to use my own positivity to help heal my own wounds, as well as try to restore the physical strength of loved ones in agony. It takes a really strong person to not fall into the trap of isolation and self pity.

All of us reading this magazine had channeled this kind of strength and will power to lead a life and beyond that which experts tried to limit us too. I never fully recognized my inner strengths. But each and every hurdle, blockade and barrier I came across, which called me to full attention, I knew I had to face. I knew I had to deal with it, and I knew I could not run. I had to take the bull by its horn, and all that came with it.

I also knew that I could neither avoid, or refrain, nor deny. My strengths came out of experiences that I just mentioned. This would help me to help others when they needed me the most. When my uncle struggled with Parkinson’s, I was able to give him my positive ways of thinking to deal with his disease and the pain it inflected upon him for well over 10 years. Throughout my life, achievements have come out of my own struggle and the inner resources I have used to maintain a strong mind, body and spirit.

Dear Mr. President

A few days ago, I spent the day writing a very long letter to our new president. I sat contently doing so, for more than 4 and a half hours without a break. I was compelled and provoked by a powerful feeling that I could not shake. It reminded me of a very long time ago in my life, when I was only 24 years old. I began this journey towards becoming an advocate because there was no one at the time to help me, or to believe in me. Thus, I began to take matters into my own hands to not only help myself, by writing letter after letter, but to assert myself by speaking up. Little did I know at the time, that I was making this a better place for all disabled people to live. And that I would become a pioneer.

The night before, I had seen a program on my PBS channel, about President Obama. They shared with the television viewer his thoughts and feelings as a man; along with his upbringing. In detail, they described his life, his experience’s, and the inner stuff that drove him as an individual to reach his goal of becoming president. That touched a cord inside of me. This report, also gave us, the viewer, a painted portrait of our president, the qualities he possess, his characteristics; his determination, charisma, and his will to propel himself to move forward in his life, and his political career.

They even explained the step-by-step directions that he took. Watching this portrayal, stirred something within my gut. Maybe its because of all the issues I have taken on upon myself. Maybe its because someone else possesses the same drive and determination as I. Perhaps its because of all the fighting I have had to do to move forward in my own life to prove myself. And, just maybe it was my innate instinct to not be bullied by others, or be treated less then who I really was. But, whatever it was, It aroused a feeling in side of me which ruffled my furry feathers.

This sketch provoked me into action. It got my attention in a way that I could not rest at all. I was unsettled. I knew I had to do something once again to not only help myself, but to make a true difference in society. Thus, I followed my gut and my heart. I stood to attention, thought for a moment, and with an automatic barometer check, I became aware of my thoughtfulness. I was aware of a mindfulness within myself. So I listened and watched very carefully. I took heed with a vigilances. Once again I found myself taking action.

If you too would like to take action and send your thought to your congressman, senator, elected official, your voice will be heard too! You too can change the world.

A New President in Office

Yesterday, like many of millions of people, I stayed glued to the T.V. watching Barack Obama take the presidential oath. I found myself reflecting back to a time in my past when Martin Luther King Jr. gave his “I had a dream” speech. I was only 12 years old. Now, I find myself reflecting on the importance of this day, our world, how far we have come, and now, 45 years later, seeing for my very own eyes an African American with similar determination and a will of firmness and purpose become President of our United States of America..

My eyes welled up with hope, as tears of promise and resole spoke sweetly from the presidents voice. I welled up with the hope of hope that he well transform our world and our lives like never seen before. I shed tears from my past and what I have gone through, and tears that these kind of atrocities will never happen to other disabled people again.

I understand a more subtle but no less real form of stereotyping. I have spent a life time working toward full inclusion, but am still struggling with the spider web of social security. It is ridiculous that a woman who has published a book, won a law suit, created a website, got one of her degrees despite what the experts said; should be offer entry level jobs designed for people thirty years younger. If I were a member of any other group the outrage felt over this injustice would have exploded the universe. It would have been a Watts Riot in hell. I truly believe that our new president should look to the untapped energy, and, the un unsung leaders of our community to help solve the other problems he is struggling with.

All of us have expended immeasurable amounts of discipline, time, and energy fighting the system to live self-directed normal lives. It would be very nice if our leaders from both parties and all levels of our government would take the time to hear and listen, and wear our moccasins for a day. I think that there should be councils of people with disabilities to sit and serve on all levels of government to protect the vital interest of our community.

One Handed Wonder

Most of my articles, for the past two years, have focused in on emotions and feelings, advocacy, and, the daily struggle of living with Cerebral Palsy. My articles also have focused in on trying to maneuver amongst society, while maintaining self direction, and dignity.

For this month, I would like to focus in on a lighter issue. I would like to focus in on daily living skills. I would also like to focus in on left or right sided paralyses. From a very early age of 18 months old, I can remember my dear, sweet, Mama Katie teaching me to contribute to the house hold, even though I had the use of only one side of my body. I can vividly recall my mama calling out to me and asking me to help her clean. She would come into the living room, hand me a dust rag, and ask me in this wonderfully, sweet, New York accent to help Mama dust the legs on the coffee table. I was only 18 months old, and at that very, young, impressionable age, I can remember smiling and wanting to help. I can remember feeling good about doing what she asked of me, and, about myself.

Most people would not have believed that a child with a disability could do such a thing. But I did. Some how, deep in my mother’s progressive gut, she really, truly, understood something that the experts did not. Now a days, their is a lot of talk about progressive technology and voice activated equipment. However, you don’t hear much about anyone talking about left or right hemiplegia people, learning how to use there good side of their body’s to accomplish every day living tasks.

My mother some how instinctively knew that it would benefit the both of us if I could lead a normal life. This was unheard of during the time I grew up. Parents were taught that there was not much hope for their child, such as I. The fact that I learned these things at such a young age, that it was gentle, and non-treating, made me willing to help and learn. These skills would come in good use when I got a bit older. No one knew in my family what was yet to come. But the handy, useful, hands on approach, and teaching techniques of daily living skills, came in good use when my mother became a single parent, and at fourteen years old, I ran the house hold, while my mother worked and ran our business.

It felt good to know that my mother could lean on me. It felt even better to know that she did not have to worry about me or the house. I would get off the school bus, at about 4 O’ clock in the afternoon. I would put my books away, get my jeans and tee shirt on, and start in with the laundry. Oh how good it felt to know that I was helping my Mama. It felt nice to know that Mama could come home to a clean, spotless home with dinner waiting for her on the table.

It felt so good to know in my heart that I could be independent. That I could be trusted. And it built my self- confidence and self-worth. I felt useful. I felt like I was doing something constitutive, special, and, felt like I was conquering things in my life like everybody else without a disability.

Sometimes I think about all those many years ago, when my mother and I took on all the negative ideas about what a young girl with C.P. could and could not do. I hope the image of that girl will bring encouragement to you when you face something that seems hard. It might help you to remember that this was something that my mother and I decided to take on. This was something I did to help me become who I am, and what I have became today. Thankfully, this was not a goal that experts wrote down in an IEP report to gather dust in an archive.

New Years Reflections

Once again, Sean Dineen has written something for our readers. Enjoy!

“Well, my friends, another year will soon be over. All of you, have worked, achieved, struggled and triumphed. My heart is grateful for all of you, for the knowledge of what we as a community, endure and achieve is marked on your hearts. By God’s blessing I have been privileged to serve as a professor of history, and worked towards my doctorate to become full time and earn a living.

Despite great obstacles, and trial, that work goes on. My inner nature, will sustain my course. You, my friends have your own quest to go on. The average person, if there be such, doesn’t know. We have drunk the cup, poured out everything we are, to become. God sees all that we are my friends, in a way many in this world cannot.

Two other great blessings came my way this year. Our guide, and light, Ms. Karen Lynn, came and spoke at Kean University, shared her fifty seven years of working to break down the barriers put over our lives, by the self indulgent and inconsequential who sit in power, and shut their eyes to all we are. Watching her in front of a group my friends, is a joy without blemish. Her voice, sooths and compels in the same breath, professors who were never exposed, join us, aware of the unique role they can play in making achievement possible.

The years melted into history, and what I saw in the front of that room was the voice of our people, distilled and shared in a way, even I wasn’t fully ready for. She can see with a real vison, and a cleansing fire. So this group moved on, fully aware, and fully committed as we are, to inclusion and acceptance.

The other event, was my second visit to South Africa. This land of many peoples, and many trials, seems to almost physically, arch typically represent our struggle. The Afrikaner people, along with their English settlers, created a society, unlike any other, more committed ironically to disabled inclusion than any other land even in apartheid’s hay day. I spent two weeks exploring and learning in the company of Zulu politic ans, Shaagan tour guides, as well as people of Asian and mixed background.

This place, has become a second home to me. I cannot urge too much my friends, travel if you possibly can, its the greatest learning experience on earth. People of different beliefs and backgrounds coming together, is truly a blessing. Whatever, your disability, or financial circumstance, if it is possible, make the journey. It will also help in another way, to break down the myth, that we as a people, sit in drugged docility, unaware of the outside world. May God’s blessing wash over all of you.”

Happy New Year 2009!

For the last thirty days I have been in my warm and cozy house, celebrating the Holiday Season. I’ve been snuggled up tight as I come down with something quite big. But despite the cold, flu, and croupy cough, I managed to enjoy every last minute. I decked my hall, gave gifts of the heart, and spread good cheer. I even manage to write a number of article’s in-between my convalescing.

Their are still three more days till January first. Till then, and even after then, I am going to continue to do the one thing I do so well. I am going to continue to spread my joy where ever I go.

Historical Ironies

This entry was written by a dear friend of mine. Sean P. Dineen. I have known him for five years now. He not only is a professor at Kean University, as an adjunct teacher, but he is a fellow C.P.er. Please welcome him kindly.

As a historian, and amateur writer, it gives me a sort of dry amusement to find incongruities in the record of our daily and national lives. Since, my dear and beloved friend, Ms. Karen Lynn has allowed me the honor of sharing her public sound board, this holiday afternoon, I thought I’d dust off a few.

There is greater physical accessibility in South Africa, than the United States for wheelchair users, and it’s been so for forty years, in spite of apartheid. The most democratic nation on earth, drags its feet in bringing our community into national life, while the nation most reviled over the past half century, shows the lead. Making the country accessible was the brainchild of Prime Minister Hendrick Verwoerd, the public symbol of Afrikaner Basskaap (domination). He simply, summoned 12 of the country’s top businesspeople and told them, the accessibility problem was to be solved in a month. He told them that they could have any government help they needed, and if they failed they would be shot.

Too direct? perhaps, but the job got done. Without advocating, bullying, I sometimes wish for a little of that sort of dedication on our government leaders, in both parties. The assumption is too often, that the focus must be on medical treatments, rehab, and that certainly has its place, but as Karen has told you, and as I can tell you, the real struggle is in taking our place in the larger world. This is what society sometimes is uncomfortable with. It’s easy to give money to a telethon, yet it’s not so easy to understand the subtly of what most of us deal with.

I am a doctoral student, moving heaven and earth to get this degree, obtain full time employment, and financial independence. Although, the experts have no help for me. The agencies, believe I can do it entirely alone, or that this goal of mine, despite $90000 spent, and nine semesters as an adjunct, is unreachable. They would rather spent time at a conference in the Fiji Islands.

This degree is my one path, and yet they do not see! That’s another irony. They who use all the right words, and smile, do nothing! And the people who one would think know little and care less are cheering me on. All of you, my friends, have desire to do something in your own way. May God Grant you, and I to get that chance to stand metaphorically in the sunlight, and bask in all we are to become.

The Lighting of the Candles

For the last couple of weeks, I have thought much of what I wanted to write for this holiday season. I thought of what I wanted to say and nothing really came to me till right now. Since I celebrate both holidays, and am Jewish, I began reflecting. I reflected on the here and now, and also the past. Additionally, I reflected on when I was a little girl, and how I use to love celebrating Chanukah. For some reason, lighting the candles brought me much peace.

Not only because there was something about the candles being lit that memorized me. But because of the prayers being said during the lighting, and my grandma teaching me in Hebrew what the prayers meant. It gave me a sense of my heritage and who I was. It made me have a sense of pride and dignity. It made me feel good about myself. It also made me wonder of all those many, thousands of years ago, and what all my people before me went through.

I thought about the story of the candles. I thought about how my people thought they would only have enough oil to last for one night. The miracle of the story was that the oil burned for eight days and eight nights. I guess you could say wow, huh! Its a beautiful story. It’s a story I will always cherish.

Although, I also remember as a little girl wanting to have a Christmas tree too. I remember during the holiday season, my elementary school would bring in the Booster Club, and the Shriners; as they would put on a huge Christmas gala for the children.

Although, my Mama Katie would sweetly remind me of my up-bringing, tradition, and customs. She and my grandma both would teach me about my legacy, my roots, and my background. They would speak in both Jewish and English to my sister and me. While we don’t speak it ourselves, my sister and I still understand the language and speak somewhat at time..

I guess you could say I have been blessed. Now I have the best of both worlds. 21 years ago, I married into a catholic family, of German decent. They not only speak their German dialect, but I understand a lot of what they are saying because of my mother and grandmother speaking it fluently in our house-hold. I also get to celebrate both holidays, now. I put up not only my dreidal an menorah, but I put up the most beautiful Christmas tree and decorations you could think of. I am not only reminded of the days long ago as the lyrics ring out in the Chanukah song. But I am reminded of who I am, how I want to share my gift of light, the light that shins forth from my being, and, I am reminded daily, that the gift of giving is not just one day out of the year. It is every day of the year. It is the hope and belief to carry on.