Advocacy Training for People with Disabilities

Well I had originally written this blog to be posted on “The Takeaway” site with the interview I did with them, but a month later, even though I worked on my vacation days to churn it out it is still not posted. So, if you want to hear the interview click on the link below, but to read the blog you are in the right place. I can’t believe I busted my butt and worked through my vacation to create something that they never used.

Enjoy!

http://www.thetakeaway.org/archives/2008/05/12/4

Advocacy Training for People with Disabilities

“I would like to discuss with you the wheelchair project I mentioned in my previous e-mail.” My introduction to Bruce Curtis came through an e-mail forwarded by the country director of Mercy Corps programs in Iraq. What started out as a wheelchair project developed into a mentor relationship, Bruce had a ton of experience working with People With Disabilities (PWD) in developing countries, and eventually resulted in PWD Advocacy Training.

The training was designed to support the development of five teams of six disability activists in five Iraqi governorates as activists, social change agents and positive role models based on training that was developed and successfully implemented in Russia. Through the training, the disability activists or community educators as we renamed them for Iraq (there is no word for advocacy/activist) would learn to organize public education and media campaigns, implement community change projects, conduct trainings, round-tables and public forums for professionals, and advocate for public policy changes and new legislation.

The trainings were designed as a series to build on each other. The date for the first one was set at the beginning of February for May 3 – 8.

For two months I raced against the clock to complete everything: materials translated, travel arrangements made, sign language interpreters found, down to nametags for the participants. On May 1, I arrived in Iraq, for two more days of frantic work over the weekend with the national staff before the participants arrived.

May 3, 2008 – I was exhausted and the training hadn’t even started yet. An hour and a half had been designated for introductions, goals and objectives for the training, general program overview, role descriptions and responsibilities and discussion. Iraqis like to talk. If you ask an Iraqi their name, they will give you an autobiography. There is no such thing as a yes or no answer and they would make excellent public relations people because it is difficult to get them to answer the actual question. It’s their culture, but it makes schedules difficult and watching Americans and Iraqis interact where time is of the essence is like watching a train wreck. Add in time for interpretation–and we were two and a half hours behind schedule and the training had just begun.

Stereotypes . . . we all have them for people with disabilities. The labels we carry are we are unable to work; if our legs don’t work, our minds don’t work; we can’t live independently; if you hire us, we will be a drain on the company’s health care; we are not as productive as able-bodied people . . . the list goes on and on. The trainers Denise, an American living in Russia that started this training there 20 years ago, and Sveta, a 28 year-old visually impaired Russian attorney, introduced the idea of stereotypes by taping labels on our foreheads. We then had to roam around the room and choose two people that we would want to have as neighbors. We couldn’t see our own labels and everyone kept looking at my label and passing me by. Finally, I ended up with a gardener and a university professor. The trainers asked us to explain our choices. The Iraqis who had chosen neighbors such as a person in a wheelchair or a person with autism all had noble reasons for choosing those people — they wanted to help them. I raised my hand, “I chose the gardener, because I like gardens and I knew that by living with a gardener I would have a nice garden to enjoy and I chose the university professor, because he can help me with my homework,” I stated. The group laughed, I had been passed by because I was a farm worker.

The group was then asked to identify stereotypes that they face. When we first started doing exercises like these it was difficult for the group to stay on track. They gave five minute long explanations of things that weren’t really stereotypes. We struggled to come up with ten. We were three hours behind schedule and still had five topics of discussion left in the day.

There are two ways society views disability, the medical model and the social model. The medical model views the person with the disability as the problem and expects them to adapt, the social model identifies the environment as the problem and advocates for accessibility that eliminates the problem of the disability. To illustrate the medical and social models, Denise read the story of “Winnie the Witch” or as it was translated into Arabic Mahara Sahara. I had done a beautiful PowerPoint with the scanned pages of the book, but in what was the first of many technical difficulties, the projector was not working!

Winnie is a witch who lives in a black house. Everything is black: the drapes are black, the bed is black, all the furniture is black, it is black on black décor. Her cat Wilbur is also black, so he blends into the house. She is forever sitting on him, tripping over him and one day she trips over him and falls down the stairs. So to take care of the problem she changes his color to green. That works for a while until he goes outside and then because he is green and blends into the grass, that doesn’t work either. To solve the problem, Winnie changes him into a multi-color rainbow cat. But Wilbur is unhappy, he doesn’t like being multi-colored so he climbs into a tree and won’t come down. He knows he looks ridiculous and that is underscored by the fact that all the birds are making fun of him. Finally Winnie changes Wilbur back to a black cat and changes the décor of her house from black to a cornucopia of completing colors. Winnie no longer trips over Wilbur and Wilbur’s environment is no longer disabling him . . . everyone lives happily ever after. Ahhhhhhh if only it were as easy as waving our magic wands. However, it is just as easy to build an accessible building, as it is to build one that is inaccessible.

“I can’t even get to the back of the bus!”

“People not Profit$”

“Nursing Homes Kill.”

These were some of the signs we saw in a slide show that Bruce presented prior to his talk about the disability movement in America. People with Disabilities in America, chained themselves to stairs in front of buildings, sat in front of busses and climbed in luggage bins to protest lack of access and protested in front of thousands of public buildings. “The funny thing was that the police started arresting all these disabled protestors, but the jails weren’t accessible, so one of the good things that came out of the disability movement is now the jails and courtrooms are accessible.” Classic. He talked about the struggles of people with disabilities to be accepted to colleges and universities, to have basic access to health care and public buildings and their fight for accessible public transportation. America has come a long way on integrating people with disabilities into it’s society; however, the fact that PWDs suffer from a 70% unemployment rate tells us that there is still a long way to go.

“What do you want to be called?” Denise asked a young woman in a wheelchair. “My name is Zynab,” she answered. “What I mean is when people are referring to you, what is your term of preference?” “Zynab,” she answered. I completely agree with her, but what Denise was trying to get at was the fact that there are terms used to describe people with disabilities that are negative and positive and it is up to us as a community to define those terms. For example, the word handicap originates from the phrase “cap in hand” which refers to begging. The only person I have ever begged money from in my life is my mother. Terms like disabled, invalid and cripple are all takeaways. The best we have come up with so far is people with disabilities, so the person comes first and then the disability.

By this time it was late 5:30 p.m. and our discussion about disability language was handicapped by fatigue, long narratives from the participants and a general state of collective brain paralysis. So we adjourned. It was only day one and I felt like I had been in training for a week.

May 4, 2008 – Tiana can I get, Tiana I need, Tiana, Tiana, Tiana. I was beginning to hate my own name. The first session was discussion on advocacy and after it was over one of the interpreters, we’ll call him Mr. Fussypants, came over to advocate for himself. “Tiana, we only work from 9-5, we get at least an hour for lunch and two breaks.” “I don’t think that’s what the contract says, but I’ll look,” I reply. A discussion with the head of office reveals that the contract says they work all day and sometimes in the evenings.

The second day for me was spent at the computer dealing with logistics, reviewing the translations that I had just received, hounding the translation service to get the PowerPoints and dealing with requests. As usual, I had been extremely ambitious in what I wanted to accomplish with this training. In addition, I was trying to work with my focal points, the men who run the program in the field, to increase their capacity. I wanted them to learn how to write better beneficiary stories. I usually get one paragraph that tells me nothing:

Ali (8 years) suffers from congenital anomaly. This disease prevents him from sharing the children any event. He is looking to the children playing in parks and green areas but couldn’t play with them. He was still waiting for a long time to an opportunity to be involved in a celebration. Ali feels very happy when this dream became truth through involving him in the yearly commemoration of the PWD international day. His parents said that Ali was preparing for this occasion since the first of November, because this occasion as to him is the only opportunity to use his creative potential. His father says Ali carries Iraq flag to feel that he is coming from this great people who are coming over all difficulties
.
So I wanted to work with each of my focal points on interviewing one of their participants. At lunch I interviewed Haider.

Haider was 28 and managing a restaurant in Baghdad. He was returning from a visit to his family, who live in a governorate outside Baghdad, racing to beat the clock and get back in time to start his shift at the restaurant. At 9:00 a.m. in the morning, he failed to see a barrier in the road, hit it and drove off a bridge spanning a dry riverbed. Due to an unlocked door and the lack of a seatbelt Haider was thrown out of the car and ended up lying on his side.

“I tried to get up, but I couldn’t,” he explained. “I was having difficulty breathing.” His ribs had been broken along with a wrist. “I didn’t know at first that I paralyzed,” he said. People and policemen came to help him. “They picked me up, one man picked me up under the arms and another man picked up my legs and they put me in the back of the police car to take me to the hospital.” Whether he was paralyzed as a result of the crash, or the transfer to the car and ride to the hospital was unclear.

When I got to the emergency room the doctor made a hole in my chest to drain the fluids. Once I was in the hospital they carried me very carefully, he explained. A T13/14 complete, Haider is paralyzed from the hips down. He spent 8 days in ICU, one month in the hospital and three months in a hospital for spinal injuries..

“They gave me a wheelchair and asked if he wanted to learn how to use it, but I didn’t want their help I just wanted to get out of the hospital, it was disgusting.” Sometimes you wouldn’t see the nurse until 2 p.m. in the afternoon, they were always late with medication, if you needed help to use the restroom they were nowhere to be found, the service was terrible, the nurses just didn’t care he said. I finally escaped back home with my brother and now I live with my family, there are 15 of us, in a five-bedroom house.

Haider really wanted to go back to work, so his family helped him start a small garden from which he sells the produce. He works 10 hours a day and has expanded his enterprise to employ three people. He learned about the training when Ali, one of the Mercy Corps focal points, who lives by him, stopped and spoke to him about it.

“At first I wasn’t interested in participating,” he said. “I love my job. But my family encouraged me to come. They thought it would be a good experience for me and that I should participate to help other people with disabilities.” He explained that he wanted to help and support other PWDs the way his family helped and supported him.

Haider would like to eventually be a restaurant manager again and when asked what he hated most about his disability. “I can’t get to the bathroom by myself, I hate that.”

I spent almost an hour interviewing Haider and towards the end of the conversation, Bruce came over to listen in. After I had asked the question about what he hated most about his disability, Haider looked very uncomfortable and he said something to Ali. Ali looked at me and then at Bruce and told us that Haider wanted to talk to Bruce. Another long uncomfortable silence.
Then it dawned on me, “Oh you’re going to talk about guy stuff, do you need me to leave?” I asked. Sheepishly Ali said yes. “It’s not a big deal Ali just ask me.”

Later…

“Tiana,” Abbas (pronounced A bass) a large man paralyzed from the waist down rolled up to me and beckoned to an interpreter. He was exactly the type of person I wanted in this training, motivated, open to new ideas, eager to learn, struggling to redefine himself as a person in a wheelchair. He started telling me his story; he was paralyzed two years ago, by sniper fire. He is married with one child. “I really want to have more children he told me. “Well why don’t you?” I asked. “The doctor says I can’t.” I pointed to Bruce, “He has a child and he had his child after he became paralyzed.” Abbas’ eyes became huge, “How?” he asked. That little voice inside my head started in “Oh shit now you’ve done it, quick do something,” it admonished me. As a woman it would have been extremely inappropriate for me to have any conversation with a man, even a clinical one about sex. As a single unmarried woman, it would have been more than inappropriate. I pointed to Bruce, “It would be inappropriate for me to have this discussion with you. You should ask Bruce about it.” He rushed off to ask Bruce who told him they could talk about it later. Abbas stalked him for the rest of the day.

I don’t remember how it came about, but someone told me that Mr. Fussypants was in an uproar because Denise, one of the trainers was being rude to him. Oh my God, I was becoming a grade school teacher. I rolled over to Denise, “Denise Mr. Fussypants feels like you are being rude to him. Can you just take it down a notch?” She rolled her eyes so far back they almost disappeared into her head, “He needs to get a grip.” What could I say to that, here was a 42 year old man surrounded by people with disabilities, missing limbs, paralyzed and he was complaining about a cultural difference, the American straightforwardness was clashing with his pride.

We had taken a two hour lunch and finished around 6:00 p.m., as I packed up to call it a night, Bruce started his conversation with Abbas, it lasted around two hours. We had decided to show a film that evening, “Music Within,” based on the true story of a Vietnam vet who came back from the war with a severe hearing impairment tinnatis or ringing in the ears, it essentially rendered him deaf. The only man he could understand was Art Honeywell, a brilliant mind, trapped in a non-functioning body, he had severe cerebral palsy. It was about their relationship and their fight for rights for Americans with disabilities. Although I didn’t realize it the first time I watched the film, I had met Art Honeywell, he patrols the streets of Portland, Oregon, my hometown in his electric chair.

My stomach had started to complain around 8:00 p.m. in the evening. At 9:00 p.m. I was scheduled to show the movie. I went down in jeans, my baseball hat, a t-shirt and the hotel robe, just to give everyone a laugh. As the group was gathering, Khairi my focal point expressed some reservations about showing the film in mixed company.

“O.K. Khairi, what can or can’t they see . . .kissing?”

“No kissing,” he said.

“What if a man and a woman are in bed, but nothing is happening they are just in bed?”

“No, it is shame,”

I started feeling light-headed and broke out in a sweat, I put up my finger to signal one minute, “I’ll be right back,” I eked out trying to keep the bile down in my stomach where it belonged. I headed for the bathroom, I didn’t have my wheelchair so I limped as fast as I could; it wasn’t fast enough. I emptied the contents of my stomach on the floor in front of the bathroom. I then proceeded to empty my stomach of anything else. The robe I had been wearing was covered in vomit. I had even gotten some on my hat. All I wanted to do was crawl up to my room, but I had to resolve the movie issue.

Pulling off the robe, I slung it around my shoulders preppy style, to hide the fact it was covered in slime; I washed my face and headed back to the room. My focal point Khairi was arguing not to show the movie, my focal point Ali wanted to show it. Due to my health status and the fact that in Iraq and in cultural issues I always err on the side of caution, I cancelled the film. In the middle of my explanation to Ali, I had to beeline for the bathroom again, this time I made it successfully, but yet again I had to go back and finish the film issue. We cancelled the film due to technical difficulties, I told both Ali and Khairi that they would have to watch it and let me know and if it needs to be edited we can do that and then show it. I limped quickly up to my room to be become better acquainted with the bathroom where I ended up spending half the night.

It felt like someone was sticking a knife in my gut. I’d had a mild case of it before coming out of Iraq and a bad case of it in Egypt back in 2000, I’d also experienced it once at home, most likely caused by something I ate.

I let Sean, the head of office, know that I was ill and I told him that I thought it would be gone by morning. Shapol, the senior program officer, called me and offered to take me to a doctor. Oh no I assured her it would be gone by morning.

May 5, 2008 – 4:00 a.m. in the morning. I’m seriously contemplating throwing myself off the balcony. I refrain, one because it would take too much effort to get to the balcony and two, I’m already disabled and knowing my luck I would survive the fall and become more disabled. As an alternative I call Sean.

“Sean,” I say in my weakest, whiniest voice.

“Not doing so well?” he asks his voice clogged with drowsiness.

“Sean, I’m not afraid I’m going to die, I’m afraid I’m not going to die.”

“That bad, huh?”

We discussed my options, there weren’t really any. I could have gone to the emergency room, but there wouldn’t have been anyone there, so my only option was to suffer through until morning and see a doctor.

I maybe got two hours of sleep.

May 5, 2008 – 7:00 a.m. in the morning. I feel weak and there are lingering stomach pains, but I decide I’m going to rally. I dragged myself to the shower, the ritual of dressing, I try and make myself less pale with make-up, every 20 minutes or so I’m doubled over by that feeling of someone disemboweling me, but it isn’t as bad as yesterday.

On my way down to the training room I knock on Denise’s door. As we are talking and I share with her that I have been sick. Sveta comes out of her room and squats on the floor, her stomach hurts so bad she is crying. “I have never felt this bad before she confesses.”

Denise and I urge her that we can handle the training and send her back to bed. I head to the training room no way in hell is breakfast an option.

Denise starts the training at 9:00 a.m. with the thank you circle, it is an opportunity for people to say thank you to someone who helped them out or did something nice for them the previous day. Two minutes into the thank you circle, my head starts to spin, and my forehead breaks out in a sweat, I break for the bathroom. I’m in my wheelchair and ten times faster, but once out of the meeting room, it becomes evident that I’m not fast enough, I head to the nearest garbage can, take off the ashtray top and…

The day is over for me, Terry one of the senior program directors and his first in command Amar, one of the most gifted translators I have ever worked with, have come by to see how I’m doing. I return to the meeting room to the table where they are sitting away from the training. Terry, Amar and Shapol are telling me to go to bed. I just have a couple things to do and then I can leave.

I crawl into bed and sleep until 10:30 when Shapol brings the doctor in. He says its food poisoning and gives Shapol several prescriptions to have filled. I sleep for a couple more hours when I’m awakened by Shapol who had the medication. I’m supposed to take a pill before I eat, a pill, Cipro after I eat and then I have to replenish my body fluids. I don’t want to eat; the recent memories of my last bout with food have made me hesitant. But Shapol is a strong, Kurdish woman who has raised two children, I’m no match for her gentle insistence. But I put on a great whining show, until I realize I sound like Mr. Fussypants, which is unacceptable to me.

After lunch I sleep the afternoon away until I’m awakened by the doctor’s second visit. He checks my blood pressure. It’s low. I tell him it’s always been on the low side. He prods my stomach and asks if it hurts and then looks at my lackluster performance in drinking the electro lights. He informs me that Sveta has done a much better job and if I don’t shape up I will be getting a colonal, I don’t recognize the word, but realize he is talking about an IV when he points to my vein. I promise to do a better job. I’m not motivated by his attempt to start a competition between Sveta and myself; I’m not really a competitive person except on the basketball court. Queen of rehydration is not a title I’ve aspired to and I’m willing to let Sveta win, but I do not want an IV and that is the threat that sends me into an electrolyte consuming frenzy. That and the fact that everyone who comes to see how I’m doing won’t leave until they made me drink at least two glasses.

Sean shows up around 7:00 p.m. with Mercy Corps next-door neighbor, Sharizon an American of Pakistani decent, to check on my well-being. Sean 5’8 lean, serious for the most part, he has a dry sense of humor and tries to run his operation with military-like precision, unfortunately the rest of us and Iraq is non-cooperative in this matter. Sharizon is a petite dark-skinned woman with beautiful thick hair, very attractive and extremely fun to be around. She is an attorney and runs a gender program in Iraq. Her residence is next to the Mercy Corps guesthouse and we often hang out together. During their visit Moaffak the head of the Iraqi Alliance of Disability Organizations and his wife Waffa come by to check on my status. I introduce Sean and Sharizon and Waffa asks what Sharizon’s nationality is, “I’m an American,” Sharizon tells her. “No,” she says. Often times people don’t understand that there is no physical characteristic that defines an American, well some people claim we walk like we own the world and they can spot Americans by our swagger, but I’m not sure I believe that.

It seems like I’m the one essential person in this training, I had to go down to the training room at lunch to fix the computer and then I rallied and attended the evening session. It seems that they are still behind and decided to meet at 9:00 p.m. to practice their school sessions. I leave the groups working on their presentations.

May 7, 2008 – The groups are scheduled to present to the schools at 10:30 a.m., they gather at 8:30p.m. to get in a little more practice. Sveta and I are both feeling much better, but we are still food adverse. Bruce is going down–his stomach doesn’t feel well. At 10:00 Shapol leads a gaggle of PWDs marching through the streets to the school, those of us who don’t walk so well take a bus. Our arrival at the school is somewhat of a circus. The kids are curious and running around, they have a ton of questions, the PWDs are scattered and I’m trying to create some type of order.

Finally the kids go to the classrooms, I assign teams to each classroom and then I settled into a classroom where Abbas and Nasser were presenting. They seemed comfortable in front of the class and other than losing his place a couple of times he nailed the presentation. Abbas also did a good job, but his presentation was cut short by some miscommunication about when the class ended. During the break, when students were changing classes, one of the participants came up to me and said I needed to be in all of the classrooms. Big sigh . . .

A different team, Bekhal and Jawaden, are doing the second presentation; Bekhal is a petite Kurdish woman with long dark hair and a beautiful voice. She is a fairly well known singer in Kurdistan. I first met her at Rozh society and she was articulate about the difficulties that people with disabilities face and passionate about wanting things to be different. I specifically requested her for the Kurdish team. She and Jawaden had the children mesmerized. I left the presentation to check out what was going on in the other classrooms, the other classrooms were going well, but in one classroom it was sweltering hot and the kids were packed in like sardines. I swear there were 60-70 children in that classroom and the fans weren’t working. I didn’t stay long.

It seemed that all of the participants had good experiences. When Denise asked about difficulties, one of the participants shared that when he asked if any of the children knew someone with a disability one little girl had started crying. She shared that her father was disabled. There had been several instances where one of the children had cried. In the classroom I was in one little girl had cried because she felt sorry for all the people with disabilities.

“I always tell the kids that they don’t have to feel sad for me, that I’m very happy and I live a full and productive life,” I said. “This is me, this is who I am, I’ve been in a wheelchair for 20 years and I’m o.k. with it, so it’s o.k. if you’re o.k. with it too.

The gang was tired, but it had been a good day. I had spent sometime talking with Maha, who lost both her legs in a bombing during the Iran/Iraq war. She was nine years old and playing outside her house with her two sisters and her brother. They heard the whistling sound of a rocket and when it landed they ran to check it out. It hadn’t exploded, but a second rocket came in, hit it and both of them exploded.

The last thing she remembered was the explosion and when she opened her eyes a week later she was in the hospital. The first face she saw was her mother’s, “She looked like she was about to lose her mind,” Maha said. The explosion had killed both her sisters and her brother’s hand had been amputated. All four of the children had been affected and it devastated the family.

“At first I was in denial,” she said. “I didn’t believe my legs were gone, but finally I realized that it was true, both my legs were gone. For a year I stayed in hiding, I didn’t see anyone but my family and when I finally went back to school the children were afraid of me and I was very unhappy.”

She was sad all the time, but her family made her go to school and go out of the house and finally she returned to the living. “My family was very supportive and this is the most important thing,” she said.

Maha had dreamed of being a teacher and when she went to college, she signed up to take courses to become an English teacher. Unfortunately the English Department was on the second floor so she switched to Library Science. Less than two months after she changed her major they move the Library Science department to the second floor so she always had to rely on her friends to help her up the stairs.

Currently she works in the media department for the Directorate of Youth and Sport.

“What was your favorite part of the training?” I asked.

“I liked the video on Ed Roberts and meeting new people,” she said.

“Would you do another training?” I asked.

“Yes,”

“What are your dreams and hopes for the future?”

“I want to get my MA in teaching,” Maha said.

She is a beautiful girl, but it is highly unlikely that she will ever get married. I hope she succeeds. I truly believe she can.

May 8, 2008 – The last day. Denise flew out this morning and Sveta presented on the UN Convention on the Rights of Persons with Disabilities. After her presentation, the participants who represented Iraqi NGOs working on behalf of PWDs gave presentations and then we heard from Moaffak the president of the Iraqi Alliance of Disability Organizations (IADO), an umbrella organization that Mercy Corps helped found. The goal of IADO is to bring Iraqis with disabilities together to speak with one voice on the issues. It is an organization that has come together across the lines that are currently dividing Iraq to advocate for all people with disabilities.

“Tiana do you have a moment?” Beha one of the participants wanted to speak with me. “How did you come to terms with your disability?” he asked. “When you become disabled you have two choices, you can either choose to live or choose to die,” I responded. “I was very angry for about year. I had been run over by an intoxicated driver and I hated the society that had made me what I was and now rejected me because of what I was. Then I started talking to young people about alcohol and other drugs and their consequences. I started encouraging them to make responsible choices. For me it was a way not to be a victim, a way to fight back. I couldn’t change what had happened to me, but I could help young people make good choices so it wouldn’t happen to them.”

He looked thoughtful, he had a lot more questions, but at that moment I didn’t have time. I promised him that I would make time for him later. “You promise,” he asked. He was 26 and a science teacher, he had lost his right arm above the elbow in a bombing during the Iran/Iraq war. After more than 10 years he still had not come to terms with his disability, it was still an issue for him.

I know that my emotional healing came through my public speaking. The acceptance I felt from the young kids I spoke to, the fact that after I shared my story with them they embraced me and even sometimes admired me. Acceptance is a great healer. I became irreverent about my disability. It also helped that I spoke with Bob and Donny. Bob is a triple amputee and Donny is a quadriplegic. Both of them were former drug users who had become disabled in car crashes Donny had been high and drove into a mailbox and Bob and his brother had been high when they crashed into a power pole.

Later on my way upstairs I ran into Beha. “You promised we meet,”

“Yes,” I replied. “Can we talk over dinner? Find someone who can translate and meet me upstairs,” I told him.

The kitchen was getting ready to close, but the cook a Canadian of Palestinian descent offered to whip us up something.

“What’s easy,” we asked.

“Anything you want,” he replied. The staff at the Suli Palace had been incredible. The cook actually had a crush on me and he had prepared a special meal for me the day I had gotten sick. He told Denise that he was very disappointed that I’d not been able to partake of it. “It is so sad,” he said to Denise, “She is so beautiful and she is in a wheelchair.” As Denise told me this story we both laughed. I don’t know how beautiful I am, but I don’t break mirrors. What I did break was the cardinal rule of able-bodied people, that people in wheelchairs cannot be attractive. The able-bodied population gets confused when they see a person with a disability who is attractive. A handsome man or beautiful woman in a wheelchair confounds the mind, as if they cannot believe what they are seeing. It as if nature has played some cruel trick on them and they don’t know whether to admire the beauty or pity the flaw. Whenever I see this type of confusion I smile at the person as if I am the happiest person in the world. It confuses them even more, they cannot imagine being in a wheelchair and for some it is a fate worse than death.

Any person in a wheelchair has had the experience of some well-intentioned able-bodied person say, “I’d rather be dead than not be able to walk.” What do you say to that, “Well the thought of suicide did cross my mind, but I didn’t want to screw it up and end up even more disabled . . .” The people with disabilities who seem to adjust best are those who have a sense of humor about their disability.

I was with my work colleagues having drinks one night. I stood up to put on my coat and a voice rang out across the restaurant. “I was feeling sorry for you until you stood up,” a woman with bleached blond haired called out. “Why would you ever feel sorry for anyone in a wheelchair?” I asked her. I mean maybe I was in a wheelchair because I had set my parents bed on fire in an attempt to do them in and get my inheritance early and became disabled when I jumped off the roof to escape the fire. Maybe I wasn’t deserving of her pity? Most people with visible physical disabilities have a hundred stories of some well-meaning able-bodied person trying to relate to them about their disability. If you want to relate to someone, even someone with a disability the best place to start is assuming that you have more in common with them than different. So what do you do for work? Where are you from? Heck I’d even settle for “some weather we’re having.” To be honest I’m just like you except for the fact that I get around using a wheelchair.

Sveta and I sat down with Beha. “How did you come to terms with your disability?” he asked us. He had lost his right arm above the elbow when he was five when a bomb went off. 21 years later he was still struggling to accept his disability.

“Is there anything you can’t do?” I asked him. He admitted that he used to like to wrestle.

“You think you have to have two arms to wrestle?” I asked him. He sort of shrugged his shoulders. “Maybe only having one arm would be an advantage, it would confuse your opponents,” I suggested. He smiled.

“Look around you, for me there are millions of people who are worse off than I am. I’m lucky, I don’t like other people to tell me I’m lucky, but I know I’m lucky. I’m not paralyzed, I can walk short distances, and there is nothing that I want to do that I can’t, I live a full productive life.”

I asked him if he would rather be paralyzed or like Ed Roberts who was paralyzed from the neck down and had to spend time in an iron lung. We talked a little bit about how amputation is in a lot of ways an easy disability and we talked about the thank God I have my disability and not his syndrome.

“I remember meeting this woman who was going to work for Perspektiva for the first time, she was in a wheelchair and when I saw her I thought myself, thank God I don’t have that disability,” Sveta said. “Later when we became friends she told me that she thought the same thing when she saw me. She said she thanks God I’m in a wheelchair and not blind,” we laughed.

It is truly all a matter of perspective and developing a sense of humor. Beha didn’t achieve instant acceptance after our two hour conversation, nor do I expect that next time I see him he will be completely comfortable with his disability, but I have hopes that one day he will no longer look in the mirror and see a man missing half his arm, but instead will see himself, Beha, just a man with flaws like everyone else.

It was a crazy week with little irritations, exhaustingly long days, logistics issues, personality issues, last minute things that I hadn’t thought of and I’m sure I’m over budget. Was it worth it? Yes! Will I do it again? In a heartbeat, hopefully in October. Why, because I want Iraqis with disabilities to have the same opportunities that I have had. I want them to have choices and the right to self-determination.

What are Iraqis like? They are just like you and me, they are human beings with dreams and hopes and flaws. There are cultural differences, but we have much more in common than you might think. The Iraqis I know want peace, a better life for their children and the opportunity to get an education and make a living.

May 10, 2008 – As we passed the first check point into the Suli airport, Mr. Fussypants got into the car with me and Terry, who was on his way to Amman for meetings. He complained continuously during the last leg to the terminal, he had worked too hard, his dignity had been compromised, he had been disrespected, I hadn’t arranged a tour of the city for him, blah, blah, blah . . .

And they call me disabled.

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2 Responses to Advocacy Training for People with Disabilities

  1. Hi..

    Stumbled on you through something that came in my inbox a little bit ago.. 🙂

    Great post.. Haven’t made it through everything yet (cognitively), but what I’ve read is making me homesick for meatspace contact with self-advocacy friends and mentors down in Atlanta.. This reads as from any number of events we ourselves have had together..

    Thank you so much for sharing.. 🙂

    Warmest cyber hugs from Talking Rock.. 🙂

  2. Ali Ghazi says:

    Tiana,
    We met you as a manager for disability sector in Mercy Corps, but we find you a freind for humnaity.

    You made as much as you could for the sake of Iraqi disabled the time they are totally forgotten by the Iraqi decision makers.

    I ask you to keep that smile for the poor people in Iraq (disabled or non-disabled).

    Ali Ghazi

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