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.

The World in Which We REALLY Live

Sometimes I wonder! I really wonder if our world and society truly understands us, or, if they whole-heartedly care! I seriously wonder and ask myself over, and over again, if they ever will? I ask you, what do you think? How do you feel? Have you ever experienced anything such as I have? would you be kind enough to write and share your thoughts with me for your support?

I will tell you honestly, that I have spent many a sleepless night; rocking myself to sleep with worry. I have cradled myself, saturated in tears, with a feeling of disgust , hurt, emotional pain, devastation, and deep despair of “how am I going to conquer the un-conquerable;” while staying positive, focused, and still reaching my goals of becoming productive in a world that doesn’t want to see me productive at all.

It is real hard! And, it is very unacceptable to me. It’s an inconclusive matter, that goes on and on. And never goes away! it is insupportable, intolerant, and very tedious and hard to endure. What’s more, is that no one truly see’s or feels it. These unhappy feelings come from a life-time of dealing with people who hold degree’s, and are professional experts which hold powerful, unyielding, torches that are resolute in inflexibility, uncompromising help, and unshakeable policies and procedures which cause their clients undo social, emotional, and economic grievances and hardships. These “experts” don’t realize the injury to health they cause us in body, mind, and spirit. It is an insult to our dignity, and a gross negligence on their part to the people who need a sincere hand up in order to make it in this life. It is awful, and sickens me! It is a dreadful limitation which they and society puts on us unfairly!

What if they invested their time in us? The truth is, that they and our society for the last thirty years or so, are so money hungry, and oriented, that they can’t nor will they invest their time in us; weather we are inflected with a physical disability or injury or not! They would rather make us a vegetable of the state, declaring us victims of society. And when we fight for our lives, they fight even harder with convenient cover-ups only to lock away the key and throw it away forever more!

It is as if we are only allowed to progress at a rate our experts are comfortable with. The idea that we could surpass there conclusions or evaluations is a huge jeopardy, unwelcome truth, and danger to them! These experts refuse to acknowledge that “We wish to lead normal lives.” This is very frightening, treating, and harassing. We are intimidation to them as we and our healthy desires, despite our physical limitations, hound and plaque their physics. Yet we don’t have the kind of money others have, to help ourselves.

The thought of us taking action for ourselves, or surpassing their expectations of us, causes them great humiliation; which in return cause’s then to take drastic measures upon us. It also causes bodily retribution to us; the people who struggle to make it in this world the most. Because we have no other course, or financial funds to make our dreams happen on our own, we work, deal, and bend over backwards to be agreeable with then, with every breath in our being.

Although, since It goes against everything they have been taught to believe about us; with a sly, underhanded, and sneaky vengeance, they purposely cause strife and hardship upon us. It is ridiculous that I have had to spend a life-time (57 years) pleading for the right to exist in a world that really knows no kindness or equality!

The idea of achievement is used to channel our energy into pleasing those who think they know what we should be doing with our lives! We have to waste our precious time, time, and time, and time again, convincing them we are allowed to live our lives out as we see fit!

I know I have talked about this may times before; however this issue never gets resolved. It just gets worse. I have known other people in the disabled community, who face similar struggles. Yet social workers and explorers insist and demand, without contradiction, getting and emphatically being involved in every aspect of our lives, even if we say no or don’t want their help. They don’t listen. They don’t truly care, and they just keep on!

Yet, they won’t give us the right to choose, or have the chance to succeed. They won’t give us the dignity, the state or quality of being worthy, or the honor of respect; to choose our desired interest to cave out a perfect place for our own selves, same as they have been given the gift to do. Its all a double standard, and a hypocrisy. It is a convenient way to condemn and invoke as an accusation where the conflicts are manifested as truths in there behalf, and where our humanly rights have little justification of strength, or testimony of attribute to our human behavior in society.

They think they know everything we should and shouldn’t do. They put us in a place where we have to beg and plead, and then we are put on a merry-go-round hoping against hope for endless periods of time. I am getting real sick and tired of giving my all to get ahead in life, only to give these people the right to hold this kind of power and judgement over my life. Are you? This paternalism is the worst evil in the history of our lives. Somehow we must all help to change this. We have to put and end to it as I tried over thirty years ago. Lets speak out, not be shy, and lets speak out in unison, as one! Help me please, won’t you?

Focusing

The other day, I wrote an article that mentioned some tools that I use personally to maneuver through life. One of the tools I use is to focus. I think about something of interest. Something I want to put my full attention to. Something that I feel real passionate about. And something that brings me much pleasure and joy in doing. Something that is gratifying and constructive and make me feel happy and content within.

Then I do two or three different things. The first of which is to decide what it is I want to take action on. This could be a mental thought, or a physical action. Then, I would make a list if I had to. I would write down all the things I had to do to attain and accomplish this goal. Checking them off as I reach my aim, desired results, or wishes.

Next, I would proceed clearly and carefully. Taking one baby step at a time. Putting one foot in front of the other, until I reach my attainable goal. Gradually and consistently, over a period of time, unchanging my course of thinking; I would keep my faith, and endue with all the endurance I inside myself to muster, to keep on keeping on. I would remain focused. I would visualize myself reaching these intents in my mind.

Third, I would say affirmations. I would believe in myself more than any other human being on this earth. I would believe with all my heart and soul. I would continue to believe no matter how long it took me to attain my hope. Plus, I would not allow anyone to sway me or tell me that I COULD NOT succeed or achieve! I would hold firm to my thoughts, and ground myself by being mindful and steadfast.

Forth, I would be aware. I would be conscious of all things happening in and around me. I would be sensible, alert, antiquated, and heedful. I would also practice being wise and hip, and very attentive to areas that would be beneficial to my growth.

Finally, I would read, learn, do anything I could to educate myself more on my intent and desire, and focus, focus, focus.

A Trip of Thanksgiving

Three weeks ago, I sailed the pacific seas to the Gulf of Mexico. I stopped in the ports of: Cabo San Lucas, Loreto, Guaymas, Topolobampo, Mazatlan, Sinaloa, and Puerto Vallarta. This was an unexpected trip, to a part of the world, I always wanted to see. My in-law’s got an incredible deal on a cruise, and asked if we would like to join them. So how could my husband and I pass up such a wonderful offer. So we said yes.

However, my imagination, could not prepare me for what I was truly about to see witness, and, or stumble upon. The MS Ryndanm, and all their crew, were about to treat me with much care, and take me on a trip of a life time.

As I traveled the 2,726 nautical miles of breath taking seas, my sea legs became one with the ocean floor, and, I was prompted to remember once again, of all the things I have been blessed with, within my life; and that I have been given a chance to glimpse, observe, and participate in. We departed the shores of San Diego, on October 12, 2008, on a cool evening, as my husband, his brother, his wife, and my sister-in-laws brother all waved goodbye to the pacific shores we left behind.

This was the longest cruise I had ever taken or been on. But before we even traveled more that 100 knots, we were summonsed to a passenger boat drill to insure everyone’s safety. Although, minutes before, my sweet, hubby, Chris, left our room; on a heroic search to find ice cubes. I ask you? What was he doing looking for ice cubs at a time like this? After more then 5 minutes of wondering curiously, I began to get a bit frantic.

Where was he when I needed him the most? As on our last voyages to sea, he was right by my side to help me tie my life jacket to my person. This time, however, his timing was off, and got discombobulated by where our cabin was laid out. So I pulled out our life jackets from the closet and proceeded to walk to my destination point with concern.

Over a hundred people passed me by to get to their designated station. Fortunately, for me, while walking, I found all my family members except for Chris, whom I wanted to, find the most! Then, after a few moments of worrying and laughing, with my family jokester, my husband almost pasted me by.

“Hay honey, where do you think you’re going?” As I tried to direct and real him in with my voice, while my newly adopted brother-in-law, Willie, was making me, and his sister Laura, giggle uncontrollably. After we were all lined up like penguins, four sort bells and one long bell rang as we were dismissed to go, and play. We were off to commenced voyage to Cabo San Lucas where clear skies and fresh gales awaited us.

Port after port, my mind took hold on the vastness of what I was seeing. I tried to capture pictures both in my mind, and with my photo lens, as I snapped the images that reach out and touched me the most. Harbor after harbor, I saw the poverty of the Mexican people. Yet, I also saw an attitude of desperateness, need, kindness, and gentleness; longing in there eyes everywhere I went. Not like in the United States where greed saturates our country, and our hearts and minds. These men, women, and children are grateful even through much haggling takes place in the market place and amongst the streets. They struggle with a reminder everyday of what we take for granted.

While riding on a bus into Guaymas and Topolobampo, the passengers were told by the guide of the great destruction from a hurricane not more than two or three days before we arrived in their city. The guide explained how in some parts of the city there was no infrastructure as it was just whipped out. Nevertheless, these men, women, and children pick themselves up and continue on only eighty dollars a week. It reminds me of what so many of our people go through in trying to carve out a living in our world. This is a direct representation, of the subtle injustice, that most of us in the disabled community deal with every day of their lives.

The next day we docked in Loreto, where my two brother-in-laws hailed a cab. Boy what a ride that was! When we started out, everything was smooth riding; as we saw the sites of the most rich and famous in their town. And hotels right off the water’s edge. But then, things got real bumpy! We were out for a ride of our lives! Instead of taking a paved road thirty minutes out of town, to an old Mission we wanted to see, we wound up taking a path that almost threw my husband for a loop.

The car we were using was not a four wheel drive. This lack of amenity made it difficult to travel and also unnerved my husband to no end. He was pulling his hair out with disgust, revolt, and fear. There were so many rocks, river beds, and obstacles to cross, that it sometime seemed “that we might not make it to the church on time.” Once we had gotten out of the cab, seen the sites, and had delicious casadia’s, and tacos; the road and return home proved much easier on everybody.

I truly felt a family connection with the taxi drivers, too. Through laughter, communication and connection, in their native tongue, and having married into a family that speaks the language fluently, it made the excursion and trip that much more comfortable, warm, exciting, valuable, and inviting.

Especially, our last stop! When my husband, my family, and I; visited the port of Puerto Vallarta. The cab stopped to let us observe the breath taking sculptures, to cross the street, and to visit and take snapshots of the awe inspiring sand castles. And oops! Yes, you got it! The street was so full of pot holes, rounded rocks, and gullies, that I took a flying leap into a hole, all by my little ol’ lonesome. No body by my side but me- I was walking alone and stepped right into it!

Thank God no one hit me! And thank God, I did not break a foot, or leg, and that it was our last dock to visit! If I were in the United States, I would have been terrified to be further hurt. Thankfully, I wasn’t. Thankfully all I got was a very, very sprain ankle and calve. Someone else in my shoes, or position, would have sulked, gone back to the ship, and perhaps, even gone home, but I didn’t!

The experience was not easy, as I was in pain, and could not walk like I normally do, but I found a way to keep smiling like I always do. In my mind I knew this was a trip and a moment of a life time. I knew it was truly a gift and so worth while.

Moreover, I knew that I might never ever get this kind of opportunity or chance to take in these majestic marvels again, so I forgot about my discomfort and smiled a ray of sunlight for Gods beautiful landscape, and backdrop. I also was shown how unconditionally I was loved and cared for by my family and complete strangers.

Thus, I immediately found gratitude in my own heart, and found new positive ways, to continue on my journey with gratification in my own inner self and being. My positive attitude, along with all my past triumph and tribulations, gave me a wonderful, exuberant energy, and willingness to make the best of a difficult situation for all involved.

I was so accommodating, that we went forward to visit the cost line’s and city scapes with pure pleasure and delight. So, with a bag of ice cubs, surrounding my leg, we visited an organic distillery, where all types of wine and liqueurs were made, and we drove to Casa Kimberly.

For those of you who do not know what Casa Kimberly is, it is now a bed and breakfast. Although in the early sixties, it was where Liz Taylor’s, and Richard Burton’s had their home. One could see the pink remaining bridge that linked the two homes together.

Even though I tripped and fell at my last port, I can’t express to my readers how wonderful, breathtaking, and joyous my time in Mexico and on the ship was.

Travel is something I feel is very vital, freeing, emancipating, and uplifting for us all, but especially for the disabled community. The more communicative, active, visible, and perceptible we become, the more we partake in life’s precious activities; it cultures, and joys of the world, the more we can breakdown the stereotypes, and promote the truths of our lives and beings.

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