I have seen the world through different lenses, walked different paths leading to different destinations, but several questions still hover over my head, with no satisfying answers. I have seen several experts in different fields; ballistics, genetics, law, chemistry etc. Yes, all these apply to human nature, but do you know, you can also become an expert in positivity, persistence, and hope? These build character and inner value. The environment around us is a complete lesson box that must be opened every day, step by step. My goal is not to show pain or troubles of people with Down syndrome, but to show you that they need good care and positive treatment. You must teach them how to get through this cold-blooded world without judging them or discriminating against them. Supporting them to learn how to survive and overcome the struggles of this harsh world is far more important, than feeling sorry for them. What kind of reality are we looking at here? Is it about their relationship with the world or the attitude of the world towards them?
Well, research on Down syndrome is very clear, it is not an illness, not a disease but a syndrome. In the 2009 Version of his book, ‘Human Genetics,’ David Patterson defines Down syndrome as a genetic disorder caused by the presence of all or part of the third copy of chromosome 21. Ideally, the human body is built with millions of cells. In each of those cells, you will find 46 Chromosomes. The way we develop is eventually determined by the DNA in those chromosomes. Research has established that Down syndrome is caused when there is an extra chromosome. Therefore people with Down syndrome have 47 chromosomes in their cells instead of 46. One mother famously said‘…my son has one extra chromosome, so what is the big deal?’
In developed countries, where the healthcare is excellent, children with Down syndrome are well looked after compared to developing countries. Healthcare gives us a starting point. Remember, healthcare must be accompanied by positivity, persistence, and faith. This kind of care can easily be given in a family setting and a community with people that are ready to lean on each other’s shoulders. There must be someone to believe in the unseen that everyone is disregarding. The extra efforts to provide health care every day make us develop better versions of ourselves. So often some parents will abandon such children in maternity hospitals, this kind of rejection is the mother of hatred, limiting, infantilization and labeling of individuals with Down syndrome. Why is it ok for people to keep saying things like; ‘People with Down syndrome cannot breastfeed, they cannot have relationships, they cannot learn, they look like children, they are always happy, they cannot have jobs etc.’ Such labels push towards institutionalization and this explains why there are many living in orphanages yet they have able parents.
Some orphanages surely have good care. For example in Russia, you will find children with Down syndrome in several of the designated orphanages, playing in pools of balloons, others playing with dogs, all these geared towards developing abilities. Several activities that aim at therapy will be done to improve their lives but love and care of the parents can make a greater difference. Speech-language therapy can help children with Down syndrome to improve their communication skills. By them imitating sounds and learning sign languages, it helps them communicate with the rest of the world better. Secondly physical therapy, this includes exercises, a good example is gymnastics. This helps them strengthen their muscles and give them better balance. Occupational therapy helps them to adjust to tasks and conditions related to everyday needs of a human being. Emotional and behavioral therapies work to help them find desirable responses and behaviors. They may have an intellectual disability to a certain extent and some physical growth delays but they have the same needs and aspirations in life like anyone else; they desire to have an active role in the society, intimacy, enjoying the company of friends and family, a good place to stay, gainful employment etc. If achieving these goals is harder for people with Down syndrome, why should the rest of the world make it twice harder? Naturally, the world is more inclusive, but people are callous and insensitive – my opinion. We need to get reality checks, actually people with Down syndrome can have relationships, and they can learn, they dislike infantilization, they can have jobs and it is not that they are always happy, they can also suffer from bad attitudes. I have done some quick research and results have enlightened me more. There are several successful people with Down syndrome and they prove, life is worth living. Angela Bachiler, in 2013 in Valladolid, Spain became the first person with Down syndrome ever to be elected councilwoman, serving for three years in social welfare and family as an administrative assistant. Megan McCormick, the first person with Down syndrome to graduate with honors from a technical college. Chelsea Werner the gymnast with Down syndrome. Her story is that of perseverance. An incredible person with great self-esteem. Very social and outgoing. Her parents The Werners have watched her grow into a great talent. When she was born, the doctor said something was not right, she had Down syndrome, they were told she would have low muscle tone. So at 4 years they enrolled her at a toddler’s gymnastics class and by the time she was 8, she was trying for the Special Olympics. Her ability, in the beginning, was not good. Her physical ability was not good and she could not balance but she kept practicing. She practiced 16 hours a week. All the hard work paid off, winning the international Down syndrome foundation world championship title. Plus several other titles. All these individuals fought back faster and stronger, the list is endless. We should nurture their abilities instead of focusing on their disabilities.
Great respect for the parents that have stuck with their children and supported them in all ways, Cara Jacocks shared her experience – the birth of her first child. Her son, born 5 weeks earlier, the doctor was not sure. She thought he had Down syndrome. Whereas the doctor tried to keep the full results from her, the nurse hit the nail on the head. “Your child has downs, your doctor is giving you false hope. He will never breastfeed, will never talk, will never walk, he will always be a child.” This was just the beginning, it was full of outdated and limiting statements. Do not be fooled, they are like any other child. “Evard my dear son taught me what reality is.” She narrated. “A reality where someone limits and labels a child is discriminative and it should not be tolerated. Some people claim children with Down syndrome cannot live to their full potential which is a lie.” Jacocks emphasized. Personally I know many countries have laws that protect people with disabilities.
In Uganda, the law protecting people with disabilities is embedded in the constitution. When you get close to people with disabilities life is different. People with disabilities should be included in all life spheres and activities so that they learn what all those that are able-bodied can learn. Now, how are we talking about Down syndrome in our communities? It is not something we should have a negative attitude towards. The way we choose to interact with others is what will make us who we are. Words like ‘downs boy,’ ‘downs girls,’ ‘downs mum or dad, ’ are so insensitive. Statements like ‘how high functioning can they be…” are so callous and exhaustive, we should aim at looking for solutions and not labeling.
In reality, Down syndrome is something to celebrate. Presenting a realistic picture of Down syndrome, Deborah Bradshaw had this to share. “Many people with Down syndrome are accomplishing their dreams, they are accomplishing things that able-bodied people cannot, this is what we should talk about.” Imagine a young mother whose prenatal results have revealed that the child she is carrying has Down syndrome, the doctors have said, life with the child will be nothing but a challenge. Deborah had to face such a moment but she made her decision to keep the pregnancy. She drew her inspiration from Chris Burke, having Down syndrome did not stop him from having his own television show. People with Down syndrome also make valuable differences in this world. Deborah went further. “The day my son was born he had surgery, so no time for mother-child bond. Many therapists said he would never walk, never talk, he would be nothing but a child.” Her narration was full of assertion. “However I questioned what I was told to believe. We spent so many hours, took many therapies. He didn’t walk till he was almost 5.” All along people around her insisted that the child would never read, write or have any valuable skills but she kept hoping. At 13 he still couldn’t read but Deborah saw his determination. “How could I tell him that the experts said it was not possible for him to realize his dreams, yet I was the only one who still believed in him? How could I tell him to give up? They are things he wanted to accomplish for himself. “ All in all the training and discipline, helping him out taught Deborah Bradshaw persistence, patience, a tenacity of spirit, kindness, love with a ferocity, faith in one’s plans and hope not yet seen. To pull all this off, she had to be the best version of herself. She chose to look beyond labels, and see him as someone with a unique value and purpose in this life – now he plays basketball. “It would have been easy to give up but I did not, take a moment to get to know them, those extra gifts may be a reflection of your better self.” She concluded.
We must learn to embrace the realities in our societies. Not every human being in this world is born to be a doctor or a pilot or a poet, but a poet can help a doctor become a better doctor, this also applies the other way round. Those that are able-bodied can help the disabled live up to their full potential, likewise, those with disabilities can help the able-bodied develop into their better self by keeping them committed to doing what is right and taking care of humanity.