Living on the fringes of society as a person with a disability

Today is Blog Action Day and the theme is inequality.

I have devoted a good chunk of my professional life to advocacy for people with disabilities. I’ve submitted recommendations for revisions of the IDEA (Individuals with Disabilities in Education Act) in the US, served as co-chair of the Consortium for People with Disabilities Prevention Task Force, co-lead a coalition to save a $2.5 million program for children with disabilities, and spoken publicly at San Francisco City Hall about the need for better services for people with disabilities and aging adults.

My heart was fully engaged in all of those professional activities. I know firsthand what it is like to be a person with a disability. I’ve lived months of my life as a person with severe inflammatory bowel disease, and some of those months were on disability. They were some of the hardest months of my life.

I am dismayed by the lack of progress on disability issues in the last decade. And it is not just in the US, my home country, that has failed in bringing about meaningful progress for people with disabilities overall.

I live in Sweden, and my son has special needs (which I will not address here). I feel extremely disappointed with the waiting times and paucity of services for young children with special needs. According to a report by the European Commission, Sweden — which is a world leader on issues of gender equality — is at the bottom of the pack of European countries when it comes to identifying and devoting resources to children with special educational needs.

I feel heartened to know that organizations such as Human Rights Watch have taken seriously the lack of inequality that people with disabilities face worldwide. Around the world we see horrific examples of abuse, neglect and mistreatment of people with disabilities.

In Russia, investigators from Human Rights Watch reported that children with disabilities were abused and neglected in orphanages. In Croatia, thousands of people with mental disabilities have been institutionalized against their will. In Zambia, people with disabilities have great difficulty accessing HIV prevention and treatment services.

Throughout the world people with disabilities face major hurdles in accessability, especially if they are confined to wheelchairs. Discrimination against people with disabilities continues in overt and subversive ways. I’ve experienced it in recent years even (my hidden disability is now living without a colon).

So what is it like to live with a disability?

At the age of 27 I lived with my parents while I was on disability and recovering from a severe flare of inflammatory bowel disease. I had no identity other than that of patient. I didn’t feel like I belonged anywhere. And I didn’t have the energy to do much at all. I was neither here nor there, and that is when I most felt like I lived on the fringes of society. I looked sick at the time. People had asked me if I had cancer. There was something “off” about me in the eyes of other, or so it seemed. And sometimes people kept their distance.

I had been gainfully employed in Washington, D.C. until being hospitalized for the Crohn’s flare. I remember well the day my supervisor at the time sent me an email in which she suggested that I look for other work opportunities. It was too difficult for the small non-profit to manage my work duties in my absence. I cried and cried upon reading her email. My brother, then five years old, asked me why I was upset.

“My job. I could lose my job.”

“Job, job. It’s just a job,” he said. “It’s not as important as your brother.” Indeed. But I still felt sad and anxious and couldn’t sleep that night. When I returned to Washington, that same supervisor suggested that I go on long-term disability, something I really did not want to do.

So I looked for another job. I got an interview and I was terrified that I looked too sickly to get hired. I was still recovering from that near-fatal flare of IBD. Emaciated and pale, I combed my hair over the bald spots so that they wouldn’t be so visible. I had lost a lot of hair due to malnutrition. I used makeup to hide the dark circles under my eyes. I tried to look as healthy as I could. I wanted to “pass.” I needed to “pass” to avoid long-term disability. I wanted to work, and especially on disability issues.

The older man who interviewed me talked a lot. He was friendly and kind. He didn’t seem to notice my health status. He asked me professional questions. I gave him professional answers. I passed. But I told him at the end of the interview that I had IBD. It was a major gamble, but I wanted to be honest from the start. He was kind. He hired me. And then over the next few years, he visited me again and again in the hospital. He joked with me that the hospital should name a wing after me. He showed up with compassion and stories (he was quite loquacious, in a kind-hearted way). I was lucky.

People with disabilities struggle every day to get access to the resources they need, especially health resources, and to be accepted in society. It’s not easy to be different, even if that difference is “hidden.” It is even harder when the difference is visible, and often results in stigma.

I am too jaded to have high hopes that the world will change soon. No, I don’t expect that society will be more accepting or kinder to people with disabilities as my son grows up. But I’m committed to raising more awareness about the struggles that people with disabilities experience, and to pressuring political leaders to right the wrongs. We can transform our anger and frustration into something positive, something that helps people with disabilities experience less fear and stigma, and more ease and well-being.

So come on, US Congress, ratify the UN Disability Convention!  It’s about time!

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Croatia, Locked Up and Neglected. Human Rights Watch.

Russia, Children with Disabilities Face Violence, Neglect. Human Rights Watch.

Support for Children with Special Education Needs. European Commission. April 2013.

Zambia, People with Disabilities Left Behind in HIV Response.

 

 

“Healing through our senses”

Many of us are remarkably adept at ordering our bodies around as if they were separate from us. Work now! Stay up late! Sleep now! Wake up now! C’mon body, don’t be a slacker!

The philospher Alan Watts once said:

I’ve always been tremendously interested by what people mean by the word “I,” because it comes out in curious lapses of speech. We don’t say, “I am a body.” We say, “I have a body.” And sometimes we don’t seem to identify ourselves with all of ourselves. We say, “My feet, my hands, my teeth,” as if they were something somehow outside me. As far as I can make out, most people feel that they are something or other about half way between the ears and a little way behind the eyes, inside the head. That is what you call the “ego.” That is not what you are at all, because it gives you the idea that you are a chauffeur inside your own body. As if your body were an automobile and you are the chauffeur principle in it. But you feel caught in a trap because your body is kind of a mess. It gets sick, tired, hurts, and eventually wears out and dies. And you feel caught in the thing, cause you feel different from it.

Why do we feel so different from our bodies? We think ourselves out of our bodies and forget that we actually live in them. We have constraints in the modern world that make it challenging for us to live fully in our bodies. I get that. But we’ve got to still try to make some time, even five minutes a day, to live embodied lives. More

More than mindfulness

I have practiced mindfulness meditation for almost 20 years. I started practicing mindfulness meditation way back in 1994, after reading the Vietnamese Zen master Thich Nhat Hanh’s book, Being Peace.

Between 1994 and 2000, my sister and I gave each other Thich Nhat Hanh’s books, and we tried to apply his teachings on mindfulness to our lives. In 2000, my sister and I went on a retreat at Plum Village, the monastery where Thich Nhat Hanh lives and teaches. We were there for several weeks, and our experiences there were life-changing. I’ve written about the retreat in my post: Trying out Zen medicine.

I credit mindfulness meditation with helping me to become healthy again after years of struggling with debilitating flares of inflammatory bowel disease. With mindfulness, I learned to listen to my body and to my intuition in ways that supported my physical and mental health. I also learned how to relate to strong emotions, even if they still take me for a roller-coaster ride at times. Importantly, during some of the most difficult times of my life, I felt the support of the Sangha, the community of mindfulness practitioners.

I am something of a poster-child for how mindfulness can help people to experience less stress, less illness and more joy and freedom in life. But I want to be clear — especially with the upsurge of mindfulness as a panacea for just about every ailment in modern life — it wasn’t just mindfulness that helped me. More

Walking the line

Today is the last day of Crohn’s and Colitis Awareness Week in the US. So I am writing a post today to raise some awareness about what it is like to live with inflammatory bowel disease (IBD). I have been really lucky to have stayed in remission for so long (now 8+ years).

Earlier this week I had a virus in my gut that could have triggered an episode of IBD, as it did almost 13 years ago. I was lucky this time around. Thirteen years ago, I needed to be hospitalized for two weeks because of the flare that the virus brought on in my gut. This week, I recovered my health within just a few days.

I walk on the line between the healthy and the sick. I am in remission, yes, and I can eat many more kinds of foods than I could when I was sick. I can go outside of my home without the fear that I won’t find a bathroom in time. I rarely have pain in my gut anymore, and if I do, it is usually due to gastroparesis, another gastrointestinal condition I have.

I have not been hospitalized for a flare of Crohn’s colitis in over ten years. In these past ten years I have not been confined to my bed for weeks on end nor have I had to worry about malnourishment or elevated liver levels. I can breastfeed my son without worrying about him getting any small dose of immunosuppressants, since I have been off of these meds for almost four years. The fecal calprotectin tests that my doctor orders still show no signs of inflammation in my gut, and I don’t worry about this test, I know what the results will show. I can feel it in my gut.

But those years of illness took a toll on me. More

Throwing away my ideas about saving the world

There was a question that kept surfacing in my consciousness earlier today. It happened in the morning when I took my son into the bathroom so that I could take care of some things. My son is almost 16 months old and he is getting his second molar, along with two other teeth. My dear boy is in a lot of pain.

I lay him on the diaper changing pad. Oh, he did not like that one bit, and he voiced his discontentment. I tried to empathize with him as I was taking off his pants and diaper, and this question came to mind.

“When did I give up on saving the world?”

But my mind had no time to reflect on this question. The next task was giving my son a Tylenol suppository so that he had a chance of getting a nap despite the teething pain. I went to the sink and washed my hands after giving him the suppository, and he started whining and whining. So I started singing, “If you’re happy and you know it, clap your hands.” But he was actually playing with his penis, so I sang, “If you’re happy and you know it, play with your penis…” He looked a bit puzzled for about two seconds, then continued whining.

“When did I give up on saving the world?” I asked myself in a half of an instant, and then went back to tending to my son. I put on a new diaper and clean pants, picked him up and hugged him, and then we looked in the bathroom mirror together.

“Are you ready to take a nap?” I asked him. In the mirror there were two smiling faces. He was shaking his head “no” and I was nodding my head “yes.” I saw my cheeks in his cheeks. He lifted his shirt up so he could see his belly in the mirror. So precious, this little boy.

“It was a long time ago,” I heard my mind say, “When I threw away the idea of saving the world.” Yep, it was. More

Ten years later

Almost exactly ten years ago, I was in the hospital for a flare of Crohn’s colitis. On May 4th I will celebrate ten years of being Crohn’s-hospitalization free.

When I think back on that time of my life and see images of the past, my eyes well up with tears. My life seemed to be in pieces so much of the time. But paradoxically, those years were also rich with love, joy and compassion. People were there for me in amazing ways. I was there for me in ways I never thought I could be.

I took nothing for granted. Every morsel of food that I ate was a treasure. Sleeping through the night was a gift. Just feeling the energy to do what healthy people did would make my day.

I haven’t forgotten what it was like to be a person with a disability. I haven’t forgotten the mortal fear of death or writhing in pain with no hope of relief. I haven’t forgotten the debilitation nor the emaciation that I experienced. There were weeks of being starved by doctors, months of eating baby food, and years of not knowing if I could plan anything in my life without a whisper of fear in the back of my mind saying, “But you could get sick again.”

More

Birthing the unknown

The day finally came. After over 280 days of nourishing the growing baby in my belly, the time came for the inception of his passage into the world.

The beginning of my baby’s passage into the world was marked by the trickle of amniotic fluid out of my body and onto my bed. My water broke shortly after 11pm on Monday, March 12. I was not having regular contractions, only weak Braxton Hicks-type contractions.

We called the delivery ward and a nurse invited us to come in to check on the baby’s status. We gathered the bags we packed for the hospital, just in case, and we headed for the hospital. I continued to lose amniotic fluid, but I noticed it was stained with meconium, the baby’s first bowel movement. At one point I stood up in the examination room and a contraction pushed a gush of amniotic fluid out of me and onto my socks and the floor. I pointed out the greenish color and the doctor in the room said we would be staying at the hospital, instead of going home and coming back in the morning, which would have been the case if meconium was not staining the amniotic fluid.

At around 2am, the hospital personnel showed us to our room in the delivery ward. We were exhausted, and yet it was very difficult for us to sleep in a hospital room. I’m a light sleeper. The clock made really loud sounds, the bed was uncomfortable, and then there were the blood-curdling screams coming from a woman in the throes of labor next door. I slept about 20 minutes in total. My partner slept perhaps an hour or two. I was not hooked up to any equipment to monitor the baby. There was essentially no reason for us to be there.
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