Tuesday, October 13, 2009

Supported Life 2009 in Sacramento with V

"A Meaningful Life... Are We There Yet?"

We were offered a choice of many different workshops to attend. V and I reviewed the choices and she made her selections for the next two days. V's choices were related to relationships, love and sexuality. I knew her knowledge of these subjects was very immature. Even though she is a grown woman, just turned thirty, in many ways she is just a child.

V's has lived with her parents all her live. As I have developed my friendship with her I realize she has never had someone she felt comfortable with to discuss her questions about life. I feel so honored to be that friend to her.

We had discussed relationships a little and sex even less. The first workshop we attended was called "Relationships...Easy as 1, 2, 3!!" The speakers talked about their own relationships with family members and with husbands. It was somewhat entertaining. The highlight of the trip was the next day, we went to a 2 part workshop given by Dave Hingsburger. We didn't know who he was but many people told us we would love him.

We attended the two workshops on sexuality and relationships by Dave Hingsburger and I was very impressed. He was awesome. He spoke about relationships and the need that people with disabilities have of being loved and wanted. Of relationships that were sexual, but were much more than that. He spoke of the state of comfortable companionship that is offered in loving relationships and needs to be thought about, talked about, taught about. He told us in a world of so many artificial connections, real ones can sometimes be taken for granted.

Throughout the two hours of wonderful stories, some making everyone laugh and some making us cry, I could see the confusion in V's face. So many questions running through her head. She wanted to understand why everyone laughed, what those words Dave Hingsburger said in his talk meant.

Saturday afternoon, we boarded Amtrak heading home. V says "Can I ask you a question?" I said of course! I had no idea what the next 2 hours discussion would entail!! (good thing I am not shy!!) First question was "What is phone sex?" Next one... "What ejaculation? Why do people like sex? What is sex? What is kinky?" and many more..... I answered each one the best I could... getting as graphic as I needed...

I would love to do what Dave Hingsburger did that day for that room full of people. What a wonderful person...

Friday, September 4, 2009

Relationships and people living with disabilities….

I recently attended the PEC 2009 three-day conference in Pittsburgh Pennsylvania. The conference was on depression and isolation concerning people with disabilities.

Through out the three days there were many speakers. A few were professionals in the area of depression, but the majority of the speakers were real people living with disabilities. They told their stories of their lives from growing up to the current struggles of their lives today.

The focus was on their adult relationships. There were some who had found a mate and the stories were heart warming. Some had children and somewhat of a conventional family life.

What we heard most from these speakers though was the desire to be like everyone else, (as they view everyone else as those people without disabilities). They wanted to meet other people their age and ask out for a date or be asked out on a date. There was one young man I remember who told hid story about being treated like any one else in his little town. He had many friends and frequented a local bar with his friends. They had a lot of good times together.

His problem was he felt jealous when the group of young men would talk about the ladies they had met and had gotten “lucky” with. He wanted so badly to ask one of the women at the bar to go out with him. But he said they were not disabled and although they were friendly with him, they would never consider actually going out with him.

There were many stories from men and women and each person expressed the same feelings about wanting to be able to have a relationship with a person with out a disability. As I listened to them and heard how they felt this was because of them and their disability, I wanted to stand up and tell them the way I see this issue, being a woman without a disability and being close to many people with disabilities.

It is not you or your disability… it is society, it is the way people are made to think about you. I don’t know when it started and I don’t know if it is truly founded or not. I guess it has to do with people being uneducated about disabilities. Some time way back when people decided if you have a disability you are not able to care for yourself or protect yourself from others, those who may do you some harm. I know this is true of some but surely not of most.

The main reason a woman would shy away from dating a man who has a disability is because of the way society has made her feel, she would feel like she would be taking advantage of you. Others would look at her as if she was abusing a disabled person. For a man it’s even worse. They would be seen as bad as a sex offender by society. They would be looked at as though they were taking advantage of women if she had a disability.

When I first started working at a center, which was a day program with about ninety-five people attending, I didn’t know people with disabilities were just like everyone else on this world. We need to educate people and expose our young to the many different people on this earth, disabled included.

Very quickly I became friends with some of the most awesome people that God has ever created. My life changed, my family’s lives changed, we now know we are blessed.

The behind the scenes activities at the center became a passion of mine, wanting to educated our society and communities to what I learned about people with disabilities. It would be a more perfect world if people no longer saw the wheelchair, the speech device, the drooling, the spastic arm or leg movements, and they saw the person the same way my grandchildren see them. I found out that there were more than one intimate relationship between some staff and some participants at the center. This was kept very secret because the staff person would loose their job and/or face abuse allegations.

On several occasions I assisted young adult couples, both with disabilities, in becoming more intimate with each other. I arranged for adjoining hotel rooms and helped create a romantic atmosphere. I helped with figuring out positions and talk with them about ways of pleasuring each other. It was very rewarding when after a couple of times they found their own way of loving each other.

I realize now I could have gotten in trouble had the wrong people found out what I did. The people who work with people with disabilities are sometimes very closed minded and want to “protect” them from the world, when at the same time those they are trying to “protect” are wanting to be treated like anyone else is here on earth…

I am working on a plan to incorporate into our elementary school a program for the student to work with people with a disability everyday… maybe as a classroom aide or an art instructor or computer instructor. They can get to know the person, ask questions and understand. We could create a generation of people without prejudice and fear towards people with disabilities.

Truly what a wonderful world that would be…………

Sunday, July 19, 2009

It’s hard growing up with Cerebral Palsy, wanting to be just like everyone else!

It’s hard growing up with Cerebral Palsy, wanting to be just like everyone else!

This story is about Lydia. Lydia is 23 and I have known her since she was just 18. A beautiful young lady with a charismatic personality and a smile that makes you smile. Lydia lives with her Mother and Father. She has an older sister who has moved out and is married. Last year her and her husband had their first child.

Lydia is very often sad and frustrated. We talked about her life in school. She was integrated into a regular school system. She attended school with children without a disability. I thought this would have been a good thing… but no. Lydia said the other students were not mean and some even helped her a little but what she hated the most is no one wanted to talk to her… no one wanted to be her friend… she was very lonely.

Lydia can use her hand somewhat more than most people with Cerebral Palsy. She cannot walk and her speech is very difficult to understand for most people. She has a communication device but she does not like to use it. Her parents treat her as if she is still a child. It seems they don’t want her to feel the feelings all young adults feel. Lydia is “Boy Crazy!!”

Lydia has had boyfriends who also have a disability. But she wants to date boys who don’t. I have heard her desperate attempts at finding a nice young man to date. To meet someone who is not disabled is very difficult for most disabled people. Lydia try’s dating website and “MySpace” to meet men. Everyone worries she may be taken advantage of by some of them.

Lydia wants to fall in love, make love for the first time, get a job, move out of her parents house, get married and have children… live happily ever after!! She thinks dating is easy if you are not disabled… I tell her that is not true. The things she goes through, boys not calling when they say they are going to, not liking her as much as she like them and so on… is something all women who are dating go through…

I see her in a big hurry to find a man… she is now 23.. still so young. There is a lot of time to find your true love. Looking around at her friends here… many are alone all of their lives, she feels a sense of urgency… she worries she will become one of them in twenty years. She may. It is very difficult for people with Cerebral Palsy to meet people. Most have extreme limitations on where they can go and very few have the opportunity to socialize. I am hoping as the community is becoming more educated about disabled people that things will change. I can see a future where we all can reach out and help offer some ways to open up their worlds to them..

Hang in there Lydia, the world is changing slowly… hopefully sooner than later.

My Best Friend Niki

My Best Friend Niki

Niki and I became instant friends six years ago. She has Cerebral Palsy, since birth. Niki was born in Philadelphia, 43 years ago. She is a beautiful black woman who has achieved many things in her life despite her disability. She has many piercing’s and tattoos. She lives with her nineteen-year-old son in a three-bedroom apartment. Niki has attendants, who come in and help her with things like cooking, shopping, laundry, house cleaning, showering, getting dressed, and eating.

Niki walks on her knees at home and uses a manual or electric wheelchair, (affectionately named “The Beast”), when she goes out. She went to college and earned a degree in business and owns two businesses.

We traveled to Sacramento and participated in the writing of SB1270, (Senate Bill 1270, for the rights of the disabled), in 2007 and 2008. We have given speeches to many different people regarding self-employment for people with disabilities. In January of 2008, we started a community website for disabled people that is similar to “MYSPACE” called www.able2beme.com .

Niki and I have traveled many places together, both for business and pleasure. We took a trip to Philadelphia, Penn., where Niki was born, for a week in 2007. While we were there she met her biological father and his family for the first time. She stayed with relatives and we met with the web designers of our web site. We had a great time and we are going back in 2010 for her family reunion.

Niki and her son Brandon have traveled to Oregon with me to visit my parents. We went camping with my family in Oregon one summer. We took a trip to New Mexico to visit a good friend of Niki’s that moved there. We enjoy traveling to my hometown of Redding, Ca. to visit my sister and brother-in-law. On those trips we always go to the casinos and gamble (hopefully win!!)

We like to listen to music and dance and go out to clubs and events. Everyone in my family loves Niki and she is very close to my five grandchildren, my children and my parents, (she and her son are part of the family!). Being around Niki has been wonderful for my grandchildren. They don’t see her disability and are openly comfortable around anyone in a wheelchair or with a disability. Seeing the way they see no difference in people makes me wonder why our community is not more forthright in bringing people with disabilities into our schools, to help to educate our young against discriminating or feeling uncomfortable around people with disabilities. Even my small grandchildren are eager to help feed Niki, sit and play with her, talk to her and care for her.
My life is so blessed to have her as my good friend. I thank God every day for opening my life to such a special friend… I love you Niki!!

I met a true friend named Charles

I met a true friend named Charles… born in New York /city with Cerebral Palsy.
When I met him he was 42 years old. He lay prone in his wheelchair and had to have both his hands tied down due to the severe, involuntary spastic movements of his arms.

Charles could speak some words that were not only difficult for him to say but also very difficult to understand. He mainly communicated with yes’s and no’s, happy and sad facial expressions. When Charles was having a good day his smile lit up the room and my heart. He enjoyed reading (listening on the computer) about the New York Yankees…. He also like to watch WWF wrestling and wanted to read about current wrestling news.

Charles used a device called a clicker to navigate on the computer. A large button connected to a keyboard using special programs allowed Charles to do spelling and mathematics. The program would ask him to spell or do math (his favorite!), then slowly highlight the answer choices. When the correct answer was highlighted Charles would move his chin to click the button and make his choice. He also worked with his communication device which was very similar, yet progress was slow he enjoyed the freedom of communication.

Charles lived with his elderly mother in an upstairs apartment. He had to be carried upstairs and his wheelchair was left down stairs because it was too big for the small apartment. He spent his time at home in bed.

I quickly became his friend. When he was uncomfortable or his hand were not tied the way he liked them he would find a way to communicate to those he was with, asking them to bring him to me so I could retie his hands and arms for him. We spend much of our time together talking about why he was sad.

Charles wanted to move out of his mother’s home and into a group home, he loved her dearly but as she grew older she was having a harder time caring for him. Family members would come over to help but he felt like a group home with others like him was where he wanted to live. He wanted to go on trips and have friend like the other people he knew with Cerebral Palsy. He wanted a girlfriend, to go out to a movie, go out to eat and other things his friend did. Many people with Cerebral Palsy, even those with supportive families, move out of their home when they become adults, just like anyone else without a disability. They either move on their own with the help of assistants or to a group home.

His mother had Conservatorship of him and did not want him to leave her. Conservatorship of a disabled person… is a person becoming responsible for the collection, preservation and investment of the incapacitated person’s property. They must use the property for the support, care and benefit of the protected individual. A conservator has a duty of loyalty and may not use any of the protected person’s assets for personal benefit. They have total control over their lives and make all decisions for them.

It was a sad fact of Charles life that he would never be able to move, unless his mother passed away. Many people tried to talk her into letting him go to a group home. Telling her it would be good for both of them to enjoy their lives. She would not hear of it… this idea was not an option.

I new Charles for four and a half years and loved him dearly…. He passed away at age 43 in 2008 from heart failure…. I lost a dear friend that day, I will never forget. My life was blessed to have had he wonderful opportunity to become your friend… Rest in Peace Charles….

Friday, July 10, 2009

Clouded is my Mind By Miranda Lingerfelt

Clouded is my Mind

By Miranda Lingerfelt

Sometimes I wonder, will I ever be free?

To be the person I want to be?

Will I ever find the real me?

I’m, twisted and tangled. Mangled in a web of painful emotions. I’ve been cursed by an evil potion. With everyday that passes by, I ask myself, why? I’m a web of painful emotions barely going through the motions. My soul slashed with a knife. What a miserable life.

Every night, I lay me down to sleep, I cry. No matter how hard I try, I can’t escape this gut wrenching pain, driving me insane.

Trapped in a black hole, tortured by screams, silent as the darkness ensnared, writhing me, my pain Why can’t anyone see? What a nightmare this is? Doesn’t anyone care? This is so unfair!

All the dreams I once had, drifted away. I am slowly drowning
in a sea of broken dreams. No one hears my screams. It seams there’s nothing left to say.

What have I done so wrong? In this world, do I belong? I’m a bird locked in a cage. Consumed by remarkable rage. With broken wings, I can sing or fly no more.

The pain, too difficult to endure. My soul’s slowly dying. I know, I must keep trying.Someone set me free. My dreams, lost in a sea of misery. Upon me, shine a light, repair my lost sight.

I’m blind, clouded in my mind. I’ve cried so many years poisoned by a world engrossed with wickedness inside me. I feel a horrifying sickness. All I want is to smile; it’s been a long while. But I can’t seem to wake from this nightmare. Please someone show me they care, set me free! Relinquish me, unfurl my wings.

Allow me to sing.

Only then will I fly happy and free.

Thursday, July 9, 2009

What is Cerebral Palsy?

Cerebral palsy (CP) is a term compassing a group of conditions that cause physical disability in human development. Normally it is a non-progressive motor, non-contagious physical disabilityhuman development. in

Cerebral refers to the cerebrum, which is the affected area of the brain. Palsy refers to disorder of movement. It is caused by damage to the motor control centers of the developing brain. Cerebral Palsy can occur during pregnancy (about 75 percent), during childbirth (about 5 percent) or after birth (about 15 percent) up to about age three.

Cerebral palsy is actually a group of permanent disorders of the development of movement and posture, causing activity limitation. The motor disorders of cerebral palsy are often not the only disturbances. There can be problems with sensation, perception, cognition, communication, and behavior problems.

There is no cure for CP. Doctor offer the treatment and prevention of complications arising from CP's effects.

The most common type of CP is called Spastic diplegia. It is a form of cerebral palsy (CP) causing hypertonia and spasticity in the muscles of the lower extremities of the human body. Usually in the legs, hips and pelvis. This condition is by far the most common type of CP, occurring in almost 70% of all cases.