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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!


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.



This post first appeared on Determined To Heal | Healing Into Wholeness, please read the originial post: here

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


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