Thursday, November 12, 2009

My Fears....

last weeks visit to AU was my last engagement for this year. in 08 I had 14 gigs and this year I end up with 15. this has been excellent considering how everyone has been seeing budget cuts. I knew it was only a matter of a before I and the disability world were more impacted by the economies.

I could understand the lack of interest for planning a speaker to come presenting at schools and organizations. To me it is more alarming how programs are being cut that help the disabled community. I just learned the rolling access fund by DDA will gone by the end of the year. This program could purchase equipment not covered by Medicare, insurance, and impossible to pay on a limited income.

Also MCIL is closing up within 3 weeks, this has been a great resource and advocate for the disable in Maryland. My fears are that the cuts will go deeper and our quality of life will roll backwards.

Pets luxturey or therapy?

When Dena and I moved, we could not bring our cat, boo boo with us. Since Mike and Brook already had a dog, boo boo is a one has pet and does not like most people. She is a small cat with a big attitude. So it would hard to find her a new home.
Boo boo and Michael seems to have a good connection, so we offer him be boo boo new dad. His first reaction was joy and no doubt. Later Michael changed his mind, not because he did not want her, but rather that he would have to pay to have a pet in his apartment.
When I moved into my apartment, I would have to pay $300.00 even if I just had one gold fish. In case the apart suffered any damages. Why does the elder and disabled need to pay a free to keep pets in apartment? I would hope landlords would see the therapeutic value.
These two demographics live on a limited income. By the time monthly bills are paid, there goes 80 to 90 % of their money. By having pets a person can be save from depression and even elongate one’s life.

Thursday, October 29, 2009

Trip To AZ SILC and NAU

It was one of those trips that we went to work as soon as our feet/wheels hit the ground, so we had a 5 a.m. ride to BWI. I always say to myself time to make the donuts.


Our first engagement was at the AZ SILC in Phoenix, from the outside it was a modern new building mostly glass. What surprises it had waiting on the inside. Like on any other trip I did not go to the bathroom until we arrive. Yes my friends, it was gimp heaven, all stalls were accessible, clean and slick. There was even a family room in side with the 10-gimp stalls.
You know how some buildings only have one, maybe two automatic doors? The empowerment center had them at every door; I have been to our mother ship.


This is what happens when people can build from scratch and do not have to retro fit. The real reason that this place is called the empowerment center is that it house 5 different organizations.



Our next gig was at NAU, in Flagstaff. We did a presentation for disability awareness month, typical deal. Screen the documentary and then do Q&A. but the faculty had a great idea, they past out note cards. So the viewers could right down their questions, so nobody knew whom it is was. This system worked so well that we went 20 minutes past the lowed time. In fact I already suggested this to the next places that I am appearing.


Our last full day in AZ we had no commitments until that afternoon. Flagstaff is only 80 miles from the Grand Canyon, so we had to go. This is where the D&D adventure begins. We had no car, so we tried to rent one. Nobody would rent to us since we were from out of town. To remind you it was 9:20 and we had to be somewhere by 2:30.


We went to the hotel desk to see if there were any shuttles from town to the park, no! There was the taxi, but big bucks. It turns out the service had a taxi going to the park anyway and because we worked with their schedule the rate was cut in half going, but full price on the return trip. The next thing was he dropped us off at the park, not in side. So before we took another cab into the park we went to the Imax show. We spent about 20 minute at the rim itself, but it was worth the magical view as you can see!!!! It took magic to see mother earth at her best.


Tuesday, October 6, 2009

Ok friend, here is my latest in search of…

We are moving to a house that is rent to own, but it multiple level a nightmare for us gimps. It has a lot pretention, as you can from my face book page I am auctioning a piece of art to start the accommodations myself. As a for, example a keyless entry to the front day and garage door opener so I can go work on art when I want.

I know I can obtain some help to modify a few things by the state of Maryland through Baltimore Co. Office of Community Conservation, I’m sure there will be limits. Does anyone know any organizations that help fund home accommodations, or purchase medical equipment to modify homes? My first communication device was purchase by the Lions club. Any ideas, or suggestions would appreciate.

i found this but can't apply on my own behalf. http://www.jillfoxfund.org/

for the Brits http://www.calderdale.gov.uk/housing/grants/accessible-homes/disabled-facilities.html

are theses for real

http://www.accessible.org/disability-grants.html

http://www.adisource.com/funding.php this one checked out

new links posted 10/26/09

www.homemods.org/directory/index.shtml


SOLUTIONS for Accessibility
119 Poplar Street
Watertown, MA 02472 USA
617.923.8877 ph & fax
877.923.8877
Dobson@SolutionsForAccess.com

http://www.vhda.com/vhda_com/template_a.asp?vhda_com_page_name=accessibilityrentalmodificationgrant
Gail Marie Braham
Community Outreach Program Coordinator
Accessibility Rental Modification Grant Coordinator
Virginia Housing Development Authority
601 S. Belvidere St.
Richmond, VA 23220
Phone: 804-343-5512
Toll Free: (877) 843-2123
Fax: 804-343-8330
gail.braham@vhda.com

National Resource Center for Supportive Housing and Home Modifications
www.homemods.org
National Reverse Mortgage Lenders Association
www.reversemortgage.org
Medicaid Home and Community Based Services Waivers Program
www.cms.hhs.gov/MedicaidStWaivProgDemoPGI/05_HCBSWaivers-Section1915(c).asp
Area Agencies on Aging
www.n4a.org
State Assisitve Technology Programs
http://www.resna.org/taproject/at/statecontacts.html
Rebuilding Together
www.rebuildingtogether.org

Tuesday, August 11, 2009

Is Society Ready For Our Relationship?

Hell no!

Dena and I have been together for 5 year and every time we turn around it is another obstacle. If it is fear of my service getting cut, it is finding affordable accessible house. Why would our Gov. make Dena be our sole provider for everything, think of how much stress that would but on us? It is just setting to fail before we could start to enjoy each other in our lives.

I alone use to live in HUD subsidized housing because of my limited income. It was accessible because of a walk/roll in shower. I made it even more accessible by installing a keyless lock, a push button thermostat, and remote ceiling fan/light. If they knew that we live together there we would have been kicked out. We do not want a hand out, but our Gov. should

look at the whole picture and just guidelines and income. Three years ago we moved into our current place own by Bozzuto. First it take us 7 months for them to put a walk way from the parking lot to tour porch. The only way to get it done was to get producer Susan Hadary of King Gimp involved, they put the walkway in the next week.

Our next challenge was the bathroom, it has a tub instead of a walk/roll in shower. A year after we moved here the complex had to replace the tub, because of rusty drain. Dena and I thought it would be a perfect opportunity for management to but a shower in. they would only install it if we splint the cost. At the time we could not afford it, so we got another freaking tub. Being who I am, I started to go through my network and finally got connected to Baltimore Co. Office of Community Conservation. Hal that work come out for the site visit and wanted to do the project the next day. 3 months later after all of the application were done and Hal got approved on his end. The big wigs at Bozzuto said go a head with the project, but only if we restore the bathroom when we move, there is not a demand for accessible units. Can someone please explain this, on top of this our rent has gone up 4 times within the last 7 months.

Dena and I are in the process of looking for a new accessible, affordable place.

Some information to share:

http://www.accessibleproperties.net

http://www.gosection8.com/

http://www.mdhousingsearch.org/

barrierfree.org

http://www.socialserve.com/

National Accessible Apartment Clearinghouse- 1-800-421-1221 or http://www.accessibleapartments.org/website/article.asp?id=4.

Wednesday, May 27, 2009

How has texting help the disabled?

 

I would have beenn perfect for this commercial



People looked at me like I was insane for getting a cell phone. Of course I cannot really use it for the phone, but is great for texting. It open a new way of communication for me. Has it done the same for others with disabilities?

Monday, May 25, 2009

life after the doc

Everyone who has seen king Gimp news I was successful when if came to me education and career as an artist. What about life?????

I am please to say I got married on April 1st 09, we had been dating for 5 years. Now I would like to share some video and pictures with you all from this hysterical event.

I and my best people entered to the Muppets O Danny Boy



My lovely bride made her enterence to the Book of Love



our first dance was to At Last




King Gimp's Wedding: The Eve from Jason Magbanua on Vimeo.



King Gimp: The Morning of the Wedding from Jason Magbanua on Vimeo.



King Gimp - The Wedding from Dino Lara on Vimeo.

After all of our guest went home, my wonderful wife and I started a working honeymoon. We packed up our WV bug, that we gave Brooke. We spent 28 fabulous days in this car go from ILL, MO, OK, TX, and TENN. And back home again without having a fight.






When we were in ILL. And MO. That was that business part of our
trip. I spoke at Benedictine University in Lisle, Illinois and for the Physical
Therapy Association Anniversary Spring Conference, in MO. This is how life should be, being able spend our life together in business and relaxation.



You may ask why I want to
do more speaking engagement, of course it is nice to make an income from what
you enjoy doing. More importantly I want to let people know anyone can reach
the goals if they find their drive.



A few weeks after our return from the trip I had a stand at World of Possibilities Disabilities Expo


http://caringcommunities.org/ and met another artist named Robert Florio I think you should check him out

Tuesday, May 12, 2009

Every Great Man Needs A Great Woman


This was one of our stops on our Honeymoon...

Dena and I stopped for 2 or 3 days in Springfield ILL, the home town of President Lincoln. We always try to find cheap hotels, that are night too much of a scratch n sniff. Cheap hotels means they are not accessible, but we always make due.

We stayed at a place called the Lincoln Ledge. We get up the next day to play tourist, but before we do. We needed to go find a place to fix the seat of my wheelchair. That is a story for a future blog. After fixing my chair, we make our way to the Lincoln house a museum. The house was more accessible then I thought, they give disabled people private tours and take them in the block off areas of the house. Although I could not go up stairs I touched the same railing that the Lincoln's use to climb the stairs. Also I saw pictures of the up stairs. After the tour the staff took time to talk with us and that is part of the video you see.

From we went to the museum and the Lincoln Memorial. The most interesting thing I found at the memorial is that the lock of the back gate is stuffed with pennies.

Friday, January 2, 2009

Why I Enjoy Speaking Engagements

I like to share my life story not to show people how successful I am even through I may be disable. But rather to let everyone know they can find the same success them I have, just need to discover what makes them thrive for life.


I also like to travel and meet now people and places. Some times I meet people how are better of then me as for the equipment and/or the services they receive. Then on the other had I see something that makes me happy how I am and what I have in my life.



Trip to Chile 06




The producers I were asked to go for our first international film fest to Chile for Teleton. Teleton is list like the Easter Seals, or the Shriner’s of America since they have own schools and hospitals.
First I was afraid that would not be able to join Bill, one of the producers for this trip. Since I already had another engagement booked the same time. In additional, Susan and Bill wanted Dena to go with us, we were approaching our second anniversary of dating. Susan the other producer was working on another project and could not join us.
It was decided that Bill would get to Chile first, since I had a commitment. After a few days of going back and forth Dena agree to join me on this once in a lifetime adventure.
Did you know that 1/3 of Chile’s population is disabled On top of that none of sidewalks do not have curve cuts, so the people in manual chairs just pull wheelies up and down the curve. Most public place is accessible at. It would be hard to tell from this video, put the video is from a tour of one school.
After three days of interviews, presenting, and tours Bill came down to the hotel lobby with his bags packed to go on his marry way around the country. Dena was confused as hell. She knows we had four more days before we went home I said just go pack our bags. The van was there to take us to one more dinner with our Teleton friends.& After many hours of good fun, food and vino Dena and I start out on an adventure for two.
We stop a food market and I said get food for 3 days. Unknowing to Dena I set up a cabin for 3 days to celebrate our two years of dating. So after two hours of riding in the dark, we finally reach it. The cabin just had the basic kitchen and bathroom. So we spent with nothing but talking, cooking, and vino. Welllll it was our anniversary!!!
The day before we left, we went up to the main office to pay the bill. To our surprise it was already taken care of. A man that worked their offer to drive us back to our cabin. To remind you, this place was at least 2 hours from the city. It turns out that he saw the HBO film and when he was young he had a brain injury and was in a Teleton hospital. When he picked me up to put me in the van, he said he just touched and angle.

The next the van came to take us to the airport, as the van pulled away we both looked back and cry.


FEMA-South West Interagency Special Emphasis Committee 06




Why do people always think Dena is my mother, or sister? When people do find out that we are a couple. They do not see as equal partner, but Dena as the “care taker” and her life is so hard.
When we were leaving this engagement a gentlemen that was in the audience caught us outside. He said to Dena, I bet your life is so easy. “I see how you two each other”.
P.S.
This was the gig that almost stopped us from going to Chile. Luckily it was in D.C., so it was an easy drop off at the airport to catch our flight.



Marywood University 06





This was Dena’s and my first speaking engagement together, Dena was so nervous. She spent most of the time running back and forth to the bathroom. It might have the few beers we had before hand along with the nerves.
One of the things that could have kept us from dating not my disability, but my fame. Dena hates the spot light. I said she was with the wrong man, because I need a woman to stand at my side. So together we can work to make a change in the world!



Oakland Community College 06




I never mean to be boastful, but I beat out Bill Cosby for this gig. Yes I do public speaking to make an extra income. But at the same time I keep in mind the real purpose of doing this. Being involve in the disability community and educational system for most of my life. I know they have limited funds and when cuts are made, these budgets are first to get the ax.
It is an internal battle over the monetary gain VS. what is gain from actual gig? I know the gig wins out, I have spoken to rooms of 20 to 2000 people and I always it is a valued experience for all.



Pinkneyville Middle School 06





This was the second Dr. Stanford invited me back to one of the schools where he teaches. He is a college professor and a middle school teacher in Atlanta. I must have made a good impression the first time, we also became good friends.
I really enjoyed the format of the presentation the school set up for me. A week, or two before arrived the show the film King Gimp in each of the English classes. This way everyone had seen it ahead of me being there. When I got to the school that morning it was a big surprise to all of the kids. They broke the classes up so Dena and I could talk with smaller groups. I would say 3, or 4 classes at a time for 45 mins.
Because the film was shown in advance, we had more time to converts with the classes and had questions prepared. I was asked "what is my greatest accomplishment"? I look to my right and said she is sitting next to me. Dena replied did you here the questions. Everything else I have done was a solo success with the help of me circle. While a relationship can only be successful only by two people.
This time when Dr. Stanford asked to the school, the next night they putting on a play and asked to attend. We gladly did, I do not look at gigs just to do my thing and split. I hang out and talk to people, since they might be too shy to ask a question while I am on stage. When we go for out of town it be fill with activities with the group that hired me.
I think it is the experience of meeting new people and sharing ideas that benefits all of us.


University of Baltimore celebrates diversity with King Gimp. 09


Sorry to be a downer on this one, but I feel the Sekai’s story has to be told. I do not like to be thought as a role module. It did relief Sekai’s for an hour or two while we were together. It is best that I let his mother tell the story, sadly it end by Sekai taking his own life, because his young soul could not deal with his body as a prison.

What is the difference between valuable and valued?, I asked. I was not being sarcastic, or witty, as is a common form of communication in our family. My mother had caught an edit in the program for this very service, and I was suddenly intrigued by the meanings of these two words. We sat and pondered for a moment, and then she answered: “well, something can be valuable, but not valued.” Indeed. Point well taken. Synonyms for valuable include precious, expensive, costly, dear. Synonyms for valued include appreciated, esteemed, cherished, loved. Indeed. The use of the word was a typo of sorts on my part, but it gave me a point from which to begin this statement.
Sekai said more than once that he did not feel valued. Disturbed by his deep sadness, angst, anger, seeming refusal to even attempt to enjoy any goodness in life, I began yet another round of begging, pleading, questioning that often led me to answers I needed, but truly did not want. Don’t you remember what Sekai means? Yes, Mom, I know, full of laughter. What happened? Where is your laughter? When I was gone, my laughter wasn’t valued, so it went away. Well, Ms. So-and-so at school told me that you kept her laughing on the day she wasn’t feeling well, so I know that somebody appreciated your laughter, your jokes, your silliness. At school they appreciated it. At home, at my foster home, they didn’t laugh at my jokes. I would say funny things, and they didn’t laugh. My laughter wasn’t valued, so it went away.
He also said more than once that he did not feel important. When his class did a dance routine for the picnic following the awards ceremony, before the dance, he worried that people would laugh at him; after the dance, he was sullen because he did not get to do his solo dance. He said it made him feel that they thought he was not important. And this after he had fretted and practiced the jiggy to the left, jiggy to the right, up, down, now zigzag, stretching his arms as far as they would go, and working hard to stay with the rhythm regardless of where the spasticity might want to take his limbs.
The spasticity. The cerebral palsy. Do the doctors know about this? He asked when I gave him the name of the condition that he recognized in students at my friend’s class at UCP, but did not recognize in himself, having never been given an explanation of why his body was different. Do the doctors know about this? Can they cure it? Are they working on it? It isn’t fair. It isn’t right. Why aren’t they trying to fix it!? He had thought it was only the dislocated hip that was keeping him from walking, and apparently was not aware that there was something that caused the dislocation, though he knew that it could have been repaired. Actually, the dislocation could have been prevented had the hip been repaired before it pulled completely out of the socket. And the pulling out of the socket could have been prevented had he received the baclofen pump that had been recommended years before. Or the neurosurgery that he would have had at age four had he simply been allowed to stay home. He also attributed some of the not being able to walk, to even step anymore, or stand on both legs, or even sit straight, to the broken leg…for which we still do not have any reasonable explanation.
But there was a critical lack of reasonable explanations. And every time we went to another doctor’s appointment, we were both made painfully aware of the reality of just how badly wrong things had gone since he was snatched from his loving and caring family by the very helping professionals who were employed to make sure things did not continue to go wrong in his life. The appointments started with two orthopedists, both of whom commented that there was nothing that could be done about the hip now. The second one added that it should have been done five years ago. After that appointment, Sekai refused to urinate for about a day and a half, taking his pain and sadness and anger out on the body that he felt was the source of so much pain and sadness. The first orthopedist pulled back his gown, and let out a profane explanation, loudly questioning just what had been done to my son’s legs. In 35 years of working with kids with cerebral palsy, he said, he had never seen a leg length discrepancy so severe: a whopping 6 inches. He questioned why the scars were so long, and crooked, and why he still had osteotomy plates in ten years later, and how exactly a child who did not ambulate independently had snapped his femur clear through. And why it had not been properly set to allow it to heal straight, rather than at a downward angle. I believe he vomited that night. Or maybe again refused to urinate. Or refused to eat. Or maybe he lashed out, fighting me as I tried to put him to bed.
Fighting you? Yes, fighting me. He was so angry. But really he was hurt. Why didn’t you come back for me? I waited for you. I WAITED for you. And I was coming for you son, really, I was. I had to fight courts in Baltimore. I had to fight courts in DC. I had to fight the agency. You still fight the agency. Yes, and I will continue. For me? Of course for you. You would fight for me? Of course for you! What about Raymond? What about Raymond? He is still there. And there are other foster kids, kids like me. What about them? I want to help them. I want to tell my story, so we can help the others, too. I want to go on tv again and this time tell my story. Ok, but let’s get you better first.
The appointments went on and on, and so did the bad news. “Are you aware that he only has one testicle?” I only have one testicle!? Why do I only have one testicle!? More bad news. “The build up on his teeth has led to severe gum disease. This has happened over a long, long period of time. The gum disease is really bad. There may be concern about healing from any surgery, concern about the condition of his heart.” This, the day before the day. More bad news. Weeks previously, we saw his gastroenterologist to find out what was to be done with his new feeding tube—new because he had pulled out the gtube button to prevent being given feeds for extra nutrition. He had a fever, and we were both pretty sure he had an aspiration pneumonia. After all, just the night before, he had leaned back in bed on day four or five of his depressive episode-turned-vomiting-fit and vomited up into the air and then breathed it back in. I asked her what could be done to make him stop vomiting. “Nothing. Once they learn that the vomiting works, there is nothing that you can do. They either keep giving themselves pneumonias and die from a pneumonia, or they end up having to be trached, and then you’re looking at six months tops. Or they just choke.” Ok, let’s go back. How do you make him stop vomiting? “Is he sick, or is he doing it on purpose?” He’s seriously depressed. He’s doing it on purpose. He engages in self-injurious behaviors. He says the story ends with the boy going to heaven. “Then there’s nothing you can do, and you need to be prepared for that.”
Nothing I can do? But I have fought for him almost his entire life. His name is Sekai Ayinde. He can kick this depression. His laughter is in there somewhere. And we have been praying for him! Nothing I can do? What about the psychiatric programs, the therapy programs? So we called. And we waited in emergency rooms. And we called from ER hallways. Yes, he talks. A lot. No, he uses a wheelchair. So, you’ll take him, but you’re not sure if he’ll get anything out of it? And he might be upset?...oh, the others don’t talk? OK, um, how do you do groups then? Oh. They’re not processing groups. The program down the hall? Oh, yes, they said they won’t take him because he might be preyed upon. Ok. Thank you anyway. So, they said no. At least this program didn’t blame it on the wheelchair, or say they would not do activities of daily living. Let me ask you a question, psychiatric social worker in unnamed urban hospital. Where do the kids who have multiple disabilities, but average or greater intelligence go for treatment when they are depressed? Depressed to this degree, when they are really planning to not keep breathing? I mean, where do they go for treatment if they can’t take their own selves to the bathroom, can’t get their own food, but can talk and think and rationalize and have these deep, deep, deep trauma wounds and are so tired they just want to be done? You don’t know? Are they all dead? What I am supposed to do? Take him home and just pray he doesn’t die tonight?
Able to think and talk and rationalize. He was. But few believed it. And he knew this, and it hurt him terribly. Why do they think I am dumb? Why do they think I am not smart? I hate it when they talk to me like that. I don’t want people to keep thinking I am a loser. I want to be a contributing member of society. I want to be a valuable member of this household, of this family. If I had stayed home, if I had stayed with you, I’d be better. I would be able to read, right Mom? I would be able to walk, right Mom? I wouldn’t have missed so much. I should have been with you. I am sorry that I gave up. I didn’t think you were coming, so I tried to go on with it. I am sorry. I should have told them! Told who? The court. I should have gone to the court and told them to give me back to you, that you are my mother and you love me. That you never hurt me. That you want what is best for me. I should have told them. You were a baby. You were just four years old. But I should have told them. I feel bad about that sometimes…
And he felt bad about so much. He asked if the people at CFSA hated him. He asked if God hated him. He was constantly afraid that someone would be angry at him, or disappointed in him. He feared professional people coming because he feared they would take him away. He feared familiar people coming because he feared they would go away. He attempted to reenact trauma over and over and over again. He didn’t want to take a shower because she didn’t let him take a shower because she said she didn’t want his equipment getting in the way of her kids. She washed us in a bucket, Mom. She would put me in my highchair, and Raymond in his chair, and wash us in a bucket…no, not a wash bin like the one we have. A blue bucket…yes, a bucket, with a handle. He fought me he said because he had fought her. He refused to eat because he had not been given food, only gtube feeds: taken straight to his room where he would sit from the time he got home from school until time for bed. Yet he weighed 76 pounds. Nearly 5’4”, and 76 pounds. Within two months of being home, he was up to 86 pounds. Four months later, the scale hit 96, then settled at 94. And he stopped eating. And started vomiting again. Stop helping me. I am tired. I don’t want to get better. But son, you’re doing such a good job! My past. My past is coming! No son, it won’t go down like that again. The judge said. And too many people know. They’re watching now. It won’t go down like that again. No, the memories. The memories keep coming. And I get so _________...and I don’t know what to do. Try to hang on. Work your therapy. Let’s keep working on the medicines. You want to tell your story, remember. You want to help kids in foster care. You want to help kids with disabilities. I’m too afraid to go on tv. People will look at me. You go. You do it. You tell them. I’m tired. I want to go to heaven. I know you’re not ready for that to happen. Not the pleading look. Dude. Stop. I am not giving you permission to do this. I am not giving you permission to do this! Let’s not talk about it. Let’s…honey, please, ok? Just try? Tell them what happened to me. Tell them about the other kids. We can tell them together. Let’s just get you well, get you healthy again. Let’s get you adopted. Then we can tell everyone, together. I am tired….Tell them not to treat foster kids like this. Tell them not to take kids away from their mother’s who love them. Tell them not to treat kids bad just because they have a disability. It hurts their feelings.
And his feelings were so, so hurt. He wanted to be home. He wanted to be happy. He wanted to feel the love, to accept the love, to return the love. But at every turn, he was reminded of what he had missed. Did you have Thanksgiving last year? I should have been with you. I should have had Thanksgiving. I should have had Thanksgiving with you. And Nnenne. And Uncle Iff. And Aunt Joan and Uncle Steve and Nicci and Erik. Did you miss me last year?...This is my second Christmas. I am 15 years old, and this is my second Christmas…I should have grown up with my godsister…I should never have been a teenager with them. I should never have been a teenager in diapers in a highchair in a room not able to use my power chair at home. They took my liberty, the freedom to make my own decisions and have the kind of life that I want. They took that from me, when they took me from you.
And he just did not know what to do with that. And it tore at him so, and he tore at himself, as apparently he had for eleven years, since the day I was made to walk out of that hospital, and he was made to learn that mommies really aren’t all powerful and sometimes evil comes knocking even on a four year old’s door, and bad people sometimes do such harm, and sometimes even good people let bad people get away with doing something horrible…and little boys turned teenage boys who hurt that deeply for that long get very, very tired.
Sekai, honey, I do understand. You asked if I would be ok, and eventually, I will. But I miss you so so so much, and now I hurt. You asked if I would be angry at you. If I would be disappointed. And I have to be honest. After I was done being scared when I heard that sound, and then didn’t feel your heartbeat. After I was done pleading with God in between rescue breaths. After I was done standing in the rain watching through the ambulance windshield as they worked on you. After I was done trying not to think, hoping against all odds that the flatline-turned-erratic peaks had become a normal up-down behind that curtain. After I was done holding your body, and kissing your beautiful face, and holding your suddenly straight hands. For a moment or three, I was disappointed, and very angry. How could you not give me more time? Six months to undo eleven years? But then the games started up again. There was a call that your body was going to be moved to a warehouse. Then the agency was not exactly sure where your body was located. Then they compared their hurt to my hurt, but yet refused to do what needed to be done to lay you to a proper rest. And then I remembered your question, and I understood your point, that maybe no, they would never leave you alone. So, rest well in the arms of your savior. I will tell them. We will tell them. Remember:
*Forever, I love you always
Don't worry He'll be there always
And just because you've had yourself a couple bad days 
Don’t mean it’s gonna be this way always
[*”Always”, by Jason Champion. First line changed to represent one of the ways that we sang it to each other.]

http://remembersekai.blogspot.com/2009/10/birthday-memories.html



Blue Ridge Independent Living Center, Inc. 20th Anniversary Celebration. 09



Dena and I always enjoy meeting and visiting people. At this luncheon we decided to sit at a back table with a couple of friends we just met. One of the goes by the name Garry, his story has become more commend now that society sees no one belongs in institutions. With the help of BRILC, Garry now lives a full filling life in his own apartment and a job as a security guard. As I say everyone is a contributor to society.

Thursday, January 1, 2009

Some Stories From My Past

What A Crock

My name is Dan Keplinger, I am disabled by C.P. I ride around in a power wheelchair and speak through an interpreter or by writing. I graduated last May from Towson University with my major in Mass Communication and minor in Art. I am getting ready to start grad school at University of Baltimore this spring. I am telling you this because I am often assumed to be retarded because I can’t speak. I guess I should wear a T-shirt saying University graduate.

I want to share with you two events of the past months which me wonder...Am I in the mainstream of life? Will I ever be accepted or recognized as a contributing member of society?

In September, I was coming up York Rd from office of services for students with disabilities at Towson University. I was by the library when this lady comes across York and starts running up behind me. She said do you believe in the lord? I kept going, because most of time religious fanatics and other borderline crazies get the hint, but not this lady. She kept following me. She says in the name of the lord I command you to stop. This is when I knew to speed up as she was catching up with me. I decided to cross the street with a car coming thinking this might stop her, but it did not. I started up the alley across from the courthouse towards my apartment. By this time she was putting the bible on my head and hitting me with it and speaking in tongues. I got pissed now so I turned around and started going off but she put the bible in my face. We were close to my place but I pulled into the auto repair place, this is when she kept saying I had Satan in me. The guys in the shop had to call the cops. She still followed me home, and the policeman had to get her away from my building.

I was more shocked about it then scared, as I was sitting in the auto shop smirking. It was kind of a pulp fiction situation. Now that I think about it this could have been really dangerous. That was the reason I did not stop to confront her, if she was crazy enough to risk getting hit by a car as she chased me, who knew what she was willing to do. She might have even had a weapon or be thinking of purifying my evil spirits with a blood-letting ceremony.

Yesterday was the court date with the bible freak, what a bullshit job. Basically, she got off and made me look like I did not know what happened. She showed up all fake like, all cleaned and dressed up with her churches Pasteur. First the judge would not hear the case, because she did not have a lawyer and I don’t think he really want to take my statement that I typed. The judge asked the police officer to come and testify. He was fantastic he told the story they way it was. She still didn’t have a lawyer. She admitted to everything. I had given my written statement to the judge and the prosecutor. But they did not read it aloud.

Then the judge said she did not cause a scene. Even though the cop said people gathered when she prayed on hand and knees on the sidewalk. The judge said more people should do it. He also used a lame ass excuse that because I ca not speak she had no way of knowing that I had wanted her to stop. I guess he had already forgotten the testimony of the police officer made only minutes before. It gets better, the judge, lady and the Prosecutor had a conversation about my perception of the event. The whole time they did not asked me one question and Susan was with me. I wanted to say do you understand the term fuck off so bad. The more I think about it the more pissed off I get, because they were questioning if I was retarded or not...it was if I did not exist in that courtroom.

I would like to know why I did not get my day in court like any other person? Did the judge assume I was deaf or retarded? Did the judge not listen to the testimony of the police officer that clearly stated that I was repeatedly trying to get away from this woman. Did the judge not hear the police officer say that many times he told the woman to stop and she would not or that she even followed me home. Was the judge this woman's lawyer? Or did he just like women who apologized - earlier in the morning he had made a joke about a female lawyer who apologized, wondering why his wife could not learn from her. Apology and prayer seemed to be the way to this judge's heart. It seems he would have us all praying on our knees on sidewalks at busy intersections in downtown Towson. What would justice have been? Perhaps not jail, but definitely community service working with people who have physical disabilities. A little education certainly would not hurt and may even enlighten religious fanatics who roam the streets with bibles trying to exorcise demons from people in wheelchairs. And to the judge, I say ... Individuals with disabilities have rights, just the way your son and daughter do. The police officer definitely knew I was in distress and communicated this repeatedly to the woman while she was involved in her bizarre religious ceremony for which I was the very unwilling victim. Although I survived, the event was a definite step backwards for the disabled when judges allow them to become the subjects of prolonged harassment, no matter what the religious label. We are entitled to justice and I think this judge owes many others and me an apology.

Posted January 1999

Hell Flight

Like I said, I took my first flight by myself in the summer of 1997. I live in Baltimore and my
best friend lives in Nantucket, I planed to leave on Wednesday and return on Sunday. By the way there are no direct flights from Baltimore to Nantucket, so I had to change planes in Newark. My mom takes me to BWI for a 3:00 flight to Newark, first the flight was delayed because of mechanical problems. then it was delayed because of the weather, the flight finally took off around 6:00. I was not able to take that flight, because my connected flight was schedule to leave Newark 7:00.

On Sunday I left Nantucket about 8:00a.m. and did not get into Baltimore about 11:00 that night. I was stuck in Newark for about ten hours, I had no way to call somebody to let them know what was happening. During the time in Newark they put on and off about 4 planes thinking this was the one that would go. After a while they let me sit behide the ticket desk. I got out my board and started to spell words as a way to communicate with them. It was hot that day and they wanted to drink a lot. I did not what to do this, because I did not know how long it would be before I could relieve myself.

When I finally got to BWI, my mom was waiting with a big sports cup and a bag of burgers. Thinking would dieing of thirst and hunger. She was amaze when I told her, the people in Newark took care of me. The scheduling might suck, but they always see that I am treated well.

Posted 5/30/07

Testing Acupuncture

Last night I went for my first acupuncture treatment, I did not get stick yet. My friend Jody is almost finished his Master's in acupuncture and offered me to be his last paitents as a student. The first appointment was more of an interview and evaluation session. He ask everything from how I ate and how it comes out, to how I sleep and if I keep company during that time. The next thing Jody was to poked around my body at different points. Then he did a test to see how balance my body is, or something like that. For this Jody used a instance stick to see how close it could get to each finger and toe before it was painful. Jody decided the first thing we will try to work on through the treatments, is my sleeping patterns. I just do not sleep good, infact I hate sleep maybe it is from my C.P.

Posted 11/18/99

I went for my second treatment of acupuncture and this time jody broke out the needles. He is working my back for now, this first time was see to witch point work and witch did not. These test needle also pulled out the "porstion", around the test needle got read I do not really know what this means. The needles did not go in too far, in fact they kept falling out. During the insertion of the needles I felt some more then other. In addition while they were in the feel of have them in me come in waves. During the treatment felt very relax and still, I almost fell to sleep. I think I sat there a hour with the needles in me, Jody said I would be so tired after the treatment. I did not think I was tier than usual, but I did notice that my move was decreased for the rest of the night.

Posted 11/26/99

Third week of treatment, boy this one was pain. Jody did a few things at the same time plus he used bigger need, so this week the pain was consent and not waves of stings like last week. Because of the pain I was not as relax during or after the session. Although it still slowed down my movement after wards. Last week I did have a few nights of better sleep. I found out that the needles were falling out because of my movement, this week they were falling out like crazy. I was so lucky, last night when went to change close, I found a needle in my undies. Can you imagine how ugly that could have been? Did you know that acupuncturist do not always leave the needles. If they want decrease the energy to that point, the needle stays in. When the energy needs to increase at the point, they only stick the point with the needle.

Posted 12/1/99

Bar Fight

My friend Jody and I went to New York for a few days to hang out last week while I had some art on exhibit at the U.N. with eMotion Pictures: An Exhibition of Orthopedics in Art.

One night Jody and I got kicked out of a place in n.y. We went to this place for dinner and had 3 beers each. Then we moved to the bar for a few more and the bar tender said he had to cut me off, because he could not understand me. After we had another drink at the bar. That would make 4 drinks all together for me. The guy said he would still serve Jody, but not me and I had 6 drinks. So he decides to cuts me since I can not order for myself.

Jody tries to talk to him and it got heated. when the manager came, he offered to move us to another bar witch were down stairs. I said no and that is Discrimination so we walked out. This was after the fucks got 100 bucks for dinner. Jody did clear off our place at the bar before we went.

Posted 1/25/02

I'm like piss at the world. A few weeks ago, I was on my to the print studio and this dumb bitch on her cell phone at a red light ran into me. She was trying to make a left turn. She pushed me a few inches she hit my leg but I didn't feel it at the time, I got a good bruise from it. She asked if I wanted her to anyone. I said no, thinking it would be more trouble than it was worth. Then she took off fast, she knew she screwed up. That night mom had the police come talk to me; he said I should always call the police. Why, so I could have another judge say I was playing tag with a car!!!!

The following week it almost happen again, but worst. I was going to ship stuff to phyllis. I see this fuck speeding down the hill, the light was red. Good thing I slowed down, because he was half way over the cross walk before he could stop.

The woman was in her 30s and the man was in his 40s. So you cannot say it is just the younger generation that does not care about the world around them.

Society, let the nukes loose.

Posted 8/5/02

Self-Imposed Exile

When I was a SR. in high school DORS got me a laptop to double as a communicator and mounted onto my chair. I really hate using communicators, they always break down, and when they are on my chair I feel trapped. Plus I can't use them without my head stick, so either I have to get the person to put my head stick on to talk with them, or ride around with the head stick on. The computer survived my last year of high school, but not freshman year of college. In fact I went through three computers that year. They kept falling off my chair, while I fought with DORS to get it fix I had no way to do my work this sucked so hard. This is what I got from being a good gimp and trying to conform to society.

So how the hell do I communicate with society as a whole, l do not!!! When people are around my enough they get used to the way I talk. My friends and family end up being interpreters a lot of times. Even they have trouble understanding me sometimes, when this happen I just spell out the word of think of another way to say it.

What happen in school? The people that dealt with on a regular bases also got used to the way I spoke. I always tried to get the some note takers, because they would also act as my interpreter. In the worse case, when I new we had to talk in class and no one was used to me, so I did used my computer, but it sat on a safe desk.

What about every day task like banking, shopping. You should know I do not expect everyone to take the time to understand me. When I do my banking I type out what I want and take that paper with me. If I am shopping for a certain item, I type that out to show to the people that works that store. If I am really getting no ware with talking, I do carry around a sheet of paper with some phrase, numbers and the alphabet on it. I use a straw in my month to point, or to spell out the words. I also use communicating by talk as a way to feel people out. Over the years found if people are really interested in getting to know me, they pick up my speech quick. The people that are not cool will not get to understand me.

Posted 7/24/07