Disability across borders

Norway vs. Rwanda

- Are we really all that different?

The answer is of course yes. Yes, we are different. In so many ways. What scares me though, is that I wish Norway would be even more different, when it comes to thoughts on disability.

My friend and colleague Christian Karlsen was contacted by a lady named Ines Musambeyemariya from Rwanda. He posted his story on living with Cerebral Palsy on the webpage worldcpday.org. Ines contacted him for further advice, as her dream is to create awareness and improve the lives of children with disabilities in Rwanda. Christian asked me to help, and the result became this article, and one more to come.

From World CP day in Rwanda

In Rwanda they don't have resources to prioritize people with disabilities. After the genocide war they are struggling with many issues; like malaria, malnutrition and maternal- and child death. They don't have economic resources, and they don't have proper guidelines and knowledge. There is a lack of information on child disability, and few services available. As a result children with disabilities, and their parents, don't get the information they need. Many parents struggle to find their child's real diagnosis and approach traditional healers instead of educated doctors. Some of them blame God or believe that it is a curse.

Reading what Ines writes about Rwanda makes a big impression. I am thankful that I live in Norway. And I wish I could help change the lives of children with disabilities all over the world. I wish they could all be as lucky as I have been. Rwanda is obviously far from Norway, both in distance and in differences. But when it comes to fundamental thoughts on disabilities, differences and ideals – are we really all that different? I am not so sure. Especially when it comes to parenting a child that is different from the ideals of society, I think many of the same issues and questions exist across borders.

Thoughts on disability

In Norway we might not believe that a child's disability is a curse. But too many people still see disability as an unsolvable problem, a threat to normal life and development, as something we would rather be without. I am not saying I want more disability, I am just saying we should focus on the person, rather than the diagnosis.

Ines tells us about the social discrimination towards people with disabilities in Rwanda. She tells us that entire families are discriminated and frowned upon in the communities. Some families hide their children inside their houses all the time, and don’t even take them to the hospital for consults and rehabilitation. Shame is to me a keyword. Shame caused by norms, ideals and fear of the unknown.

My opinion is that all of this shame and social discrimination not only applies to Rwanda and other less developed countries. It is found anywhere in the world – sadly. However, the problem is of course more severe and crucial in Rwanda than in Norway. But that doesn't mean that we should ignore the issues we still stand in front of. When Ines asked Christian and me for advice, I realized that just about all the same advice applies in my own culture and community in Norway, as well as in Rwanda.

I think the more disability in general is discussed, the more normalized it will be. We rely completely on those brave people, like Ines, that dare to talk about the discrimination that is happening. Even though most people in Norway are openhearted, open-minded and well reflected, it does not mean that prejudice, ignorance and discrimination doesn't exist. I have heard too many stories about people with disabilities being bullied, shut out and treated as if they are less worthy. But I do also know that we have the possibility to change this. Simply by creating awareness.

Brave people marching for awareness

It seems like some tend to think of people with disabilities as «weak». Just consider the word «disabled» in general – it actually communicates that a person is less abled. I wish I could say that this didn't apply to Norway. But I cannot. However I strongly disagree. I choose to see any person as abled. Children with disabilities are actually likely to be even stronger and more hardworking than a lot of other kids. I choose to understand my own disability as a challenge, but not as a complete hindrance.

If you or your child has a disability, and you try to keep the disability a secret, you will only keep feeling more ashamed. You will constantly feed the negative thoughts and feelings. This negative spiral affects not only you, but also the people that continue to discriminate. If we dare to show the world what an amazing personality people with disabilities have, then there really is nothing to be ashamed of. I encourage everyone to be proud of their child, neighboor, friend or aquaintances – proud of their accomplishments. A person with disability has to work so hard, that each and every day, each smile, can be a huge achievement.

The power you possess as a parent – no matter where in the world

Ines is doing something extremely important in Rwanda; she is looking to the parents. How can you expect a child to have a good life if the parents can't provide for it? Parents in Rwanda struggle because they don't fully understand their child's condition. Ines worries this will affect the child psychologically. No doubt: it will.

When parents in Rwanda think their children are cursed, the children grow up thinking the same. What about Norway? Well, no matter where in the world, if a parent is filled with shame, the child will be. On the other hand: if parents see their child as a resource, as valuable and worthy of a good life, the child is likely to inherit these values.

Fortunately I think most parents in Norway approach the responsibility of parenting with great liability. Most parents will do anything in their power to give their child a happy life. We are also incredibly lucky to have a (comparatively) well working welfare system. Parents with few resources will receive great help and support from the welfare state and all its agencies. Our culture is getting ever more inclusive and understanding.

From Baan Unrak Childrens Home in Thailand: A lot of countries don't have the same aids, support and welfare. But where there's a will, there's a way.

However I know, that even in Norway, some parents struggle to understand and accept their child's disability. Although they don't see their child as a curse or punishment from God, they might feel ashamed and feel they were given a burden. Some parents may struggle to accept the aids and support offered in fear of being different. Or maybe they want as little help and aid as possible not to draw attention to themselves and their child. Some might wish too hard for their child to be as «normal» as possible.

Stop wishing for «normal»

I would like someone to define normal. Or I would like people to stop wishing for normal. As long as we keep struggling for some sort of ideal, working towards the «normal scale», none of us will be happy – disabled or not. There is no simple recipe for happiness. Not as a parent, nor as a child, not as a person in general.

In Rwanda the «normal» standard might be more crucial for survival and acceptance. In Norway the welfare system will most likely make sure you and your family survive no matter what – It is not a question of life and death. We know that no one is to blame, not the parents, not God or any other superstition. However the problem of the «normal ideal» applies to anyone, anywhere. It just comes with different wrappings.

In Norway we are pushed so hard towards success. We are supposed to do everything. And we are supposed to do it well. The common assumption seems to be that you cannot possibly live a happy and rich life unless you have a flawless health, stay in shape, get a well-paid job, and have the right friends and a picture perfect family. The truth though, is that happiness comes in so many different forms. Having some sort of diagnosis or disability is not synonymous with neither bad health nor less happiness. And it definitely is not synonymous with having no abilities or opportunities in life at all.

I guess a lot of parents feel ashamed, maybe sad and worried, or even angry. To some extent I can understand that this is a spontaneous reaction. We all wish for the best. But the truth is that a person with a disability could grow up to be perfectly happy. If the parents are unable to give their child the opportunity to live his or her life to the fullest, I hope someone else will. I hope every child will meet a significant person that treats him or her as a person and not as a problem. I hope the child has friends to play with and feel equal to. There is no one solution to this problem. I wish there was. I wish I could tell every single parent out there that everything will be ok. It is ok to worry, and be upset. But your child can still be happy, and you can still be a happy parent, it is not the end of the world.

Parvati from Thailand didn't have parents taking care of her. But she has had amazing care-givers at Baan Unrak Childrens home.

Final thoughts

Ines Musambeyemariya really reminded me of how important it is to talk about parenting. She asked questions that made me think and reflect. Even though she was the one asking me for advice, she became the one who actually gave advice herself. Without Ines this article wouldn't exist. And without her I wouldn't be working on more material on parenting. If together Christian, Ines and myself can help as much as one child, one family, no matter where in the world, I will have achieved anything I could wish for.

This whole adventure makes me realize how powerful it is to communicate across borders and cultures. I would like to learn even more about Rwanda, about other countries. I feel like we need each other. And I think we are more similar than we often think. After all we are just people – no matter where we are from or what diagnoses we might have. We have so much to learn from each other.

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