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

Thursday, December 23, 2010

Volunteering Sometimes is Not What is Expected

Well I may be wrong, but I suspect when Miriam came to help Children's Education Foundation for a short period of time she would not have anticipated how different her life and role would become.

As Miriam is a social worker and family therapist we had planned a week of meetings and home visits of CEF children who have challenging social situations. The rest of that week would be the necessary report writing. She and I only had one week free to do this.

When she arrived in HCM we talked but I felt poorly and she was too and so she delayed her trip up to Hoi An. By the time she was well again and arrived in Hoi An I felt very poorly and didn't feel well enough for the home visits and arranged for her to do them with my assistant, Duyen. I then went into hospital with suspected dengue fever.

After four days in hospital due to that pesky dengue mosquito bite Miriam took me back to her hotel and looked after me there while I regained some strength. As I recovered more we talked about CEF and I started to catch up a little. Dengue affects the brain and thinking actually hurts so I could only work a couple of hours before the pain was too much and I had to go back to sleep. Yes, any of you can use that as an excuse when you don't want to think about something!

When she could see I was well enough to leave her protective wing and get to the west for more rest, escape the remainder of the wet season and dengue infested Hoi An, she decided it was time for her to leave for her holiday in Laos.

Most of that planned visit for her had been spent looking after me! And amazingly enough she decided she would come back and help CEF further.

When she returned to Hoi An I had planned another period of meetings and home visits of the new CEF children (and of course the report writing). She also was working on developing a fundraising project with another friend for CEF.

Soon afterwards she found herself looking after me again in hospital and then in her home due to an accident I had that resulted in a fractured left fibula. Fortunately it's not serious and I am alive. Here you can have an accident and survive but then a bus or truck finishes you off! So when I realized I was alive and not in the middle of the road and without brain injury I felt so fortunate.

She has been wonderful and caring not just to the CEF children, but also to me. The worst of the pain is over and so I have reduced my pain killers and can stay awake long enough to think and work again. So Miriam has just returned from a trip to my house to pick up my computer so I can get back to CEF work.

Now I'm on Mai's bed working on the computer with the leg raised on a pillow. Mai is Miriam's house mate. Mai, a nurse has also helped CEF with home visits to a mother of one of the children we sponsor and has helped make sure she has an ongoing supply of medication for her terminal condition. Mai is back working in Australia for a short time earning money for her self-funded stays in Hoi An. She helps the local charities here when they need her nursing skills. While away she has kindly offered her room for me to recouperate in while Miriam helps care for me.

Lien, who is my security person, and home, garden and animal helper, has also introduced me to many of the children we help in Hoi An as they are from her neighborhood. While I have been recovering here at Miriam and Mai's home she has been delivering breakfast and lunch and doing my laundry,and running chores, making it less arduous for me and dear Miriam. I am very blessed and feel very loved and cared for.

It's actually overwhelming for me to be cared for by others when I am the one who is used to doing the caring. The only times I can remember being cared for and very happy to be cared for were the times when my mother-in-law came and helped look after me at home after I gave birth to three of my children. After my first and third child she she cared for me in her home. Each time she was wonderful, gentle, sweet, caring and hard working. That was very easy and natural to accept. That was a long time ago and so it's strange to need caring for and to accept it graciously as I don't want to stress my dear friend or take her away from the work she has been doing to help CEF.

A friend helped put it into perspective for me. He said that in Miriam caring for me,she is caring for and working for CEF. He said that there wasn't a more needed or better job she could do, as it was immediately needed and CEF couldn't function without it. The short term role she has ended up taking on has been more useful than anything else she could have taken on at present. It's just she is caring for CEF through caring for me, so that I recover quickly and can get on with all CEF work. He said her timing to volunteer was perfect and could not have been better. It just is not the role that either of us had planned for!

Sunday, December 12, 2010

A few drawings CEF children did last week

Many of the children do beautiful drawings. When we interview children and try to find out what they love at school most of the little ones generally say art.

The drawings on this blog were done by some of the children we have just recently interviewed and agreed to find sponsors for. One of the drawings looks lovely but tells another story. In this picture Dieu, who is 5 years old has only drawn three people in her family. There is a lovely house, herself, her sister and brother in the drawing. Unfortunately her parents drowned and since then she has been cared for by her grandparents,but she has not included them in the picture. Granny and granddad are over 80 and frail; they aren't really able to do much in the way of caring for the children. When the parents died the children were put into an orphanage by other relatives and the grandparents were horrified and removed them and have tried hard to look after them, but they struggle to do so and look very tired. Her older sister of 17 is the person who has looked after her since the parents died and Dieu clings to her, rarely leaving her side.

Some of the other pictures are joyful and were drawn by children who are less traumatized than Dieu, although from impoverished families. One girl loves literature and has written a lovely poem about her life using the lotus as the image of herself.

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