Justice

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Justice

Embracing People with Disabilities

February 7, 2017 by

two women helping a young child with disabilities in a specialized stander

In my old life en el norte, as we sometimes say around here, I worked for Rifton Equipment, one of the businesses of the Bruderhof Communities, which manufactures adaptive equipment for children and adults with disabilities. Indeed, this work more than filled the last ten or fifteen years, right up to the day we left New York to come here to Paraguay. I worked in sales and customer service, did contract work on the state and federal level, and got involved in international product regulations. Medical devices, even Class I, are complex, and I loved the challenges that came with the work.

Most rewarding, however, was the opportunity to be involved with those who use adaptive equipment and the many professionals who worked with them. I loved representing Rifton at industry conferences and networking events. The “disability world,” as it is known, is peopled with giants-of-the-heart, men and women who have made it their life’s work to improve the lot of those who have disabilities and their families. From product techs, lobbyists, manufacturers, and sales people, to physical therapists and educators, it was always about ensuring that people with disabilities had access to the equipment they need.

Advocacy groups and incredibly dedicated individuals, many of whom I got to know and consider good friends, have stormed the legislative halls to create an environment, albeit far from perfect, in which an individual with physical or intellectual disabilities, developmental or acquired, can experience a quality of life that could not have been imagined as recently as fifty or sixty years ago. As a result, curb cuts are now taken for granted, as are designated parking spots, and accessible restaurants, shopping areas, parks, and entertainment centers. Indeed, should accessibility be denied to any wheelchair user, we would hear about it. Most significantly, we have the ADA of 1990, and its precursor, the Rehabilitation Act of 1973. In short, at home in the United States, persons with disabilities are accepted, accommodated, seen, and needed.

Coming to Paraguay brought many changes to my life. Aside from the cultural adjustment, it took me a few months to realize that I hadn’t seen anyone with a physical disability. Then I met Sofia (not her real name), a beautiful child with cerebral palsy who lives a few blocks from us. When we finally met, I was thrilled to meet Sofia’s mother, who speaks English easily and with whom I could talk and ask all my questions. She explained that their economic situation enabled them to take Sofia to the US or to Argentina for therapies and interventions unknown to the majority of the disability population in Paraguay. I asked her what is available to the others, and her eyes grew sad as she replied, “Nearly nothing.”

Of course it’s not nothing. If you Google “disabilities in Paraguay” you’ll be served up more than 800,000 results, and if you look through just the first page it is obvious that there are efforts being made to improve this. Much of it comes from outside the country, international projects and groups whose concern for human rights knows no boundaries. Indeed, UNHR was here last November to assess the situation. And if you walk the streets you will find curb cuts in the newer sidewalks, and ramps to some shopping centers and restaurants. But society has not embraced or welcomed these individuals into the stream of daily life.

So where are they? The lucky ones are enrolled in programs like Teleton, an international NGO, or the Italian-funded and -administered facility, San Rafael, a crown jewel in our city. But I’m afraid many more are tucked away in poor homes, lying on beds or pallets, and being cared for by undyingly devoted family. For while they are loved and cherished, it’s government involvement that’s missing – involvement that could fund, educate, employ.

Perhaps it’s a language thing, but I haven’t heard any self-advocacy voice. Self-advocacy for disability rights in the US is strong and vocal and mature. I can’t imagine where we’d be in the disability world in the US without the sometimes strident voices of the users themselves. I’ve not detected that voice here. Is there one?

As I try to understand the needs of the disability community here in Paraguay, I ponder, in the quiet of a Saturday afternoon, the dictums of Christ when he blessed the meek and declared himself our advocate. After all, isn’t meekness the polar opposite of self-advocacy? And the “least of these,” in Matthew 25; who are they? Are they those with the voice, or those without? Are they those with access to all things material and good, or those without? Last year I held one of these least in my arms, and asked myself this same question. Pedrito is one year old now, he would be walking, had he two legs. Does he have access to adaptive devices to enable him to meet his normal milestones? Is he seeing a therapist, or at least are his parents learning how to mobilize his limbs and joints to prevent contractures and further impairment?

When Jesus comes and seeks out his least, who will he gather into his arms? Certainly Pedrito, and Sofia, and many others in Paraguay and all over the world who have not had, by our measure, all they are entitled to. They will be the first to be chosen.

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About the author

Carmen Hinkey

Carmen Hinkey

Carmen Hinkey and her husband Stephen live at the Mount Community in New York State.

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  • Dear Carmen, you served people in need that is serving God. Thank you. You did very holly work , serving the people in need. I can understand you very well. It is something different. It is voluntary work. I did that work 3 years in New York. I could do that work in US, because the disabled people has opportunity and rights in US. The Government has funds for them. They can even go summer camps in summers. I also worked as volunteer counsellor in the camps in the US and Canada. This is a duty that should come from heart. The serving people which is serving God. Now I try to reach disabled people and orphans in Turkey. But it is not easy to work for them in here. Social policies are not high as much as developed countries. I remember when I was in New York City and worked as developmental specialist, our participants in the facility have their own lawyer, doctors and psychologs. But in Turkey, the adult day centers for disabilities are not much and their conditions are not good. May be someday in the future, it will be much better than now. We as teachers are ready to be volunteer on the path of Goal.We pray God for our disabled brothers and sisters.

  • There are about 10 million disabled citizens in Turkey. I dont call them disabled citizens but the citizens who try to participate to the society. All they want is to live without help and be part of the society. They want ride to the buses and make shopping and make their meals. More than that they want to produce , they want to work. I have worked 2 years with mental retarted citizens in New York City and those years were my best years in my life. I could do something for the humanity, this made me very happy. I was very happy with them. I wish the disabled people in Turkey can reach the rifton equipments but we need big funds to furnish these equipments. Being poor and disabled is the hardest situation in life. I sometimes visit disabled or retarted citizens in Turkey. They dont have rights and equipments which make their life easier as it is in the US. We work for them as volunteer somedays. We share our love with them that is all we can do for the disabled people in Turkey.