I’ve been doing quite a bit of thinking recently about how much I want to spread a positive outlook regarding Down syndrome, and about whether or not I am doing enough. I’ve been thinking about the best ways of raising awareness, and how I and other members of the Ds community are working so hard at achieving a better society for our children. I’m trying to share Rivers’ story and show the world through the internet that there is nothing to fear. I want to show that life with Ds can be amazing for not only the person with the special needs, but also their family and I feel that I am slowly starting to achieve a small part of that.
I’ve joined groups on Facebook specifically for parents of children with Ds, and I can’t even express how beneficial this has been for me. Living in Tanzania can be incredibly lonely in regards to Ds, as I am the only mother of a young child with special needs that I know. Now I’m not saying I’m a lonely person, as I’m not. I have great friends and an amazing husband, but it can be isolating when there is nobody to talk to who is experiencing the same things. I’ve ‘met’ great people through these groups and the support you get from the Ds community is priceless.
What I have noticed through these groups though is the different ways in which people deal with the ‘typical’ public, people who have no experience with Down syndrome. There have been a lot of discussions about people within the society making uneducated comments, and being jumped on for being ignorant and rude. I’m actually starting to feel that our actions as parents of children with special needs can actually make or break our quest for an inclusive society.
“There was this woman at the supermarket and she just stared at my child. So I stared right back at her until she turned away, embarrassed and ashamed”.
“A lady actually asked me if my son was slow, so I glared at her and said ‘no, but you obviously are’”
Well that showed them right? But did it? Really? Ask yourself what this actually achieved? Who really benefited from that exchange? I’m pretty sure you still felt crappy, and it certainly didn’t help your child or the Down syndrome community. In fact, the only thing that was achieved is a big high impenetrable was built around you. Reacting with anger helps nobody at all.
Why assume that the lady was staring at you in a negative way? I am a watcher myself and love watching the world go by. Maybe she was curious or was surprised by your child and how ‘normal’ they were. Maybe she was learning, and that can only be a good thing. Maybe she has a relative with Ds, or a child herself with Ds. Maybe she is a doctor or a midwife, and is seeing exactly what she needs to see in order to make the changes in hospitals that we all so desperately want. Maybe she is watching you and thinking about what a fantastic parent you are. Maybe that lady is hurting because she gave birth to a child with Down syndrome and gave them away. Maybe she had a termination because people told her that her child would never have a good quality of life. Maybe you are proving the world wrong and making changes just by being a ‘normal’ happy family.
And asking if your child is ‘slow’ is obviously a bad choice of words. A really terrible choice of words and yes I would have felt the need to respond and correct. But is it really worth jumping down somebody’s throat, when they probably meant no harm at all? Is it really so difficult to respond calmly with the purpose of educating. Believe me I’m a feisty character, who happens to have a pretty big mouth (well I am Welsh!), but I’ve learnt over time to see that it’s more important to spread our message then to make myself feel better for a few minutes.
Don’t assume the worst in people, assume the best. It makes life a whole lot easier and much more enjoyable. We need to be really, really careful that we are not looking for arguments and excuses to be angry with society. I wrote a piece recently about how much I hate people assuming that our life is hard, and how nobody has the right to assume anything about my family without knowing us. Well that works both ways. We also don’t have the right to assume what other people are thinking. I promised myself when River was diagnosed that I would always talk openly and honestly about him having Down syndrome. I would welcome any questions and answer with my head held high and a smile on my face. I would always be so very proud of him and want to show him off to the world!
We have been given an opportunity to help make a positive change within society, to help educate people and make the world a more inclusive place. The last thing we need is to segregate ourselves from ‘typical’ families, to make people feel afraid to approach us or ask questions. We say we want our children to be accepted for who they are, but how is that possible if we don’t give people the opportunity to learn? How is that possible if we build walls of anger around ourselves? We are doing our children a disservice by reacting with hot heads and reacting negatively. I want to teach my son to let these things go over his head, and not let them affect his life or the person he is. I want him to understand that sometimes people say silly things, but that is nothing for us to feel bad about, as we can easily put them straight without aggression. Just by talking to them and showing them our reality. I will not let negative reactions have any power or influence over the happiness of my son.
How I react to strangers is what my children will see, and it’s what they will learn from. If I react with anger and get upset then this is how my babies will grow up reacting. I don’t want my children to carry that burden, to grow up thinking that defending themselves with aggression and heated words is ok. I believe strongly that I have a duty to educate others about Down syndrome, and the realities of what it really means. I want people to understand how beautiful and meaningful a person’s life with Ds can be, how much they can contribute to society and make the world a better place. I also want people to understand the joy they bring to their families and that our lives are our ‘normal’. How we wouldn’t change a thing and certainly wouldn’t change our children. Life is good, Down syndrome included.
Of course we all want to protect our children and I would fight for my boys with every breath I have. I just think there are smart ways to do that fighting, ways that will achieve so much more. I’m not saying that if somebody said something purposefully spiteful or hurtful to my son I wouldn’t defend him, there is no doubt that I would. There are also a lot of keyboard warriors out there, who say disgusting things behind the safety of a computer screen. But these are just sad, lonely people, living unhappy lives and trying to spread their hate. Don’t let them. I genuinely do believe that the majority of people in public mean no harm, and just don’t know the right things to say. We were all uneducated once and need to remember that. Can you honestly say that you knew the correct terminology before you had a child with Down syndrome? Can you hand on heart say that you could never have said the wrong thing, albeit with the best of intentions? I know now that a child has Down syndrome and isn’t Down syndrome. I know now how important people first language is, and not defining somebody by their disability. I know now to never assume that there are things that people with Ds can’t do. I know now to never call a person a ‘Downs child’. I know these things now because Ds is a part of my life, a very much welcomed part of my life. I have the best little teacher in the world in my son and he has taught me more than I ever thought possible. Not everybody is that lucky; some people can’t learn from experience and only get to learn from what we show them. So let’s show them! Let’s show them gently, honestly and happily. Let’s welcome questions, and softly correct people when they choose the wrong words or make ignorant assumptions. Let’s walk away from people knowing we have done everything within our power to open their minds, educate them and spread positivity.
As the part of the Ds community and parents of wonderful children, let’s use our knowledge and experience to break down those walls that can segregate us from the rest of society. The last thing any of us need, especially our children, is to build them even higher!