Tuesday, December 28, 2010

Refections: Window into the World of the Disabled

I want to make it clear I am not disabled. Now I want to add I am blessed to only have a temporary disability which has enabled me to look through a window into the world of the disabled. I broke one of my legs recently which dramatically immobilized me.

I live in a part of Vietnam where there are many people with permanent disabilities. If I go into town there are workshops for those with disabilities where they make beautiful products that are sold to tourists. They have been trained and are now highly skilled, but they still suffer from discrimination and back pain due to a deformed spine or they still can't hear or talk. I see others in town who had polio, or have a deformity or who lost a leg or their eyesight in the war. They move around with various forms of assistance; on crutches, with a walking stick, or in a cart a little like a large mechanized go cart, which we locally call a 'push-me-pull-me'.

In central Vietnam many suffered dramatically from the war, mentally, psychologically and physically. Some are mentally unstable or severely depressed due to the horrors of the war. Others lost a limb, or part of their face and an eye or ear; some are suffering with side effects from Agent Orange on top of their other challenges. Some have the more known side effects of Agent Orange fallout such as depression and large wart-like growths. They also rarely give birth to a normal child. Most of their children and grandchildren are disfigured or mentally retarded. We locally wonder if the high rate of spina bifida, heart abnormalities, heart disease and thyroid problems are also due to Agent Orange.

So my disability is a blip in comparison. I remember lying on the road in an ecstatic state when I realizing I wasn't dead. I felt so grateful to be alive. Soon after the accident I was blessed with lots of help and support. Lien who helps with my garden and home brought me food and did my washing. Miriam looked after me in her home and helped me with the simple things that were now hard such as making tea, making the bed and putting the mosquito net around me at night.

I found the first week of using crutches excruciating. I struggled and stumbled a little, and my chest, arms and hands all ached from having to use them. Then my body adjusted.

My dreams and plans for the next few months were dashed and had to be abandoned; some of the changes were easy to accept but the abandoned visit to my family wasn't. I felt sad, disappointed and started to feel low.

Over the following days that lowness made everything too much, such as the showers, getting dressed and undressed. My hands were occupied with holding the crutches to stabilize me and having no free hands and only one leg to stand on made bathing or dressing hard work. I felt frustrated that I could do so little and was so dependent on the help of others and was low as everything was just plain hard to do. I then felt guilty for feeling that way. I was alive and had so much help, and that this was just a temporary disability.

In receiving a lovely supportive email from a friend and recalling lying on the road, the gratitude I felt in being alive returned and the lowness disappeared. I was truly blessed and this was just a very short term hiccup in my hopes and plans.

This whole experience started me imagining what it is like for someone who has a disability that isn't going to go away, one that they have to live with every day of their lives. They have to depend on others to help them permanently in some way. What is it like to live all the time knowing there are some things you cannot do, that perhaps you could do before, or that you see and hear about others doing? What is it like when you cannot manage unless someone else does things for you ? What is it like when you will just never be able to do what you want, no matter what? What is it like to live with that dependency on others and maybe permanent pain?

There is a group of children we help whose parents or grandparents have had leprosy. It has been treated but they are left without toes or fingers or parts of their hands or feet. They don't just have a disability but also suffer from discrimination wherever they go.

One mother whose children we help to receive an education has had breast infections and tumors as well as being affected by polio. She was too weak to even look after her children when she was ill. She is much better but still needs daily help from her husband, sister-in-law and her children. She can’t work and her husband can only work a little because he needs to help look after her. So they stay impoverished. What is it like to know your poverty is the result of your condition?

Another mother has heart disease, has had thyroid tumors and is too weak to work. She struggles to look after her children and needs a lot of help and support from her husband. Due to her health she can’t work so they consequently never have enough money and have to live with the resulting poverty.

One of the girls we help to go to school has a mother who can neither hear nor talk. I wonder what her life is like and what she has to deal with each day besides being unemployable from the Vietnamese perspective.

I have a son with a disability so this accident has also made me think about him and what it is like for him. He has had dreams of doing things, and has wanted to make career choices that he can't and never will be able to. He was sometimes disappointed when he came to that realization, but at other times was furious that his disability would mean he would be discriminated against.

Through my experiences now and what I see and hear, I understand my son's world and those with a disability just a little more, but will never truly understand. My compassion and respect for anyone with a disability has grown hugely. I now know a little of some of the challenges they have to face every day for the rest of their lives.

I feel those with disabilities need compassion and understanding, patience and tolerance and perhaps an excellent counselor who will have some knowledge and experience of the challenges they live with day in and day out. But they don't need molly coddling.

Sometimes I feel that we, non-disabled, have a view that is so far removed from theirs that we have unrealistic expectations of what people with a disability are capable of. In this way, we can create more problems than solutions for them.

Sometimes it may be just what the doctor ordered and helps motivate and support them in what needs to happen to help them become more independent and integrated in their community.

But to be honest as a person without a disability it is not just hard, but impossible to truly know what they need, how they need to be treated and supported and what their lives really are like.

For donations:
Please see our blog'Information on Making a Donation'
Or Americans can contact Stephen at cef.vn.usa@gmail.com
and Australians can contact Graeme at c.e.f.vietnam@gmail.com

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