What Prenatal Testing Means To Me by VATTA – Canadian Down Syndrome Society

(music playing) 40, 50, 60 years agoyou probably would not have seen us You probably would not have even heard about us We could have been a family secret Kept behind closed doors Isolated and limited

30, 20, 10 years ago, we made great strides in the Down syndrome community Even though these strides have been made, there is still an uncertain future for many people with Down syndrome Prenatal testing is affecting our future

Dr John Langdon Down was the doctor who first described Down syndrome This would later be the reason it is called Down syndrome today But, it didn't start that way! We were called awful and hurtful names like Mongolian idiots (or mongoloid) and mentally retarded Families were told that we would never be able to do anything, so doctors said we should be locked away with "other people like us

" So, people with Down syndrome were put in institutions We were treated badly We were not given medical care when we were sick or hurt We would get punished if we acted out We had NO rights

Can you believe this happened even in the last 30 years? In the early 1900s, most of us would have died when we were children Some changes were made with language In 1961, scientists said that people with Down syndrome were no longer called Mongolian idiots In 1975, the United States National Institute of Health made it standard to say Down syndrome Then, even bigger changes started to happen: More families decided to raise their children at home Students with Down syndrome started attending schools in their community Laws were passed to ban discrimination The Canadian Down Syndrome Society started in 1987 Slowly, we were given more rights

Oh how far we have come Or have we? In 1976, prenatal testing for Down syndrome became more common In 1983, women over the age of 35 were offered prenatal testing for Down syndrome

These tests were sometimes dangerous, but were common Now there is a new blood test to see if an unborn baby has Down syndrome It is almost 100% accurate So what this means – if a parent does not want a baby with Down syndrome, they can choose to end their pregnancy That leads to our next conversation

Language affected us in the past But now, it is affecting us today Take a look at the two words on the screen Testing and screening I'd like you all to think about what those two words mean for a second We prefer to say testing because this is only looking for an answer

Our research says that screening means to keep out something that is not wanted Well, research says that about 90% of mothers will end their pregnancy if they find out their baby has Down syndrome Has anyone ever wondered how this makes us feel? Imagine a world without the person you love with Down syndrome (music playing) Imagine a world without us I have a place in this world I am HERE

I am living in the Canadian society and I use the Canadian society resources I got an education, I use the health care system, I get a monthly cheque from the government And I am able and willing to give back to society by volunteering, by working, by voting, by being out in my community and showing people how well I can do things I am a small piece of the material which makes our society work Let me do my part

If I wasn't here, my family wouldn't have a loveable son and brother I participate to the fullest and make positive contributions My positive contributions are that I can stand out, I work with charities and organizations, I am a photographer, I work at a movie theatre, and I pay taxes I like to say that being "different" isn't really being different My extra chromosome is part of my uniqueness

I participate to the fullest and try my best to make positive contributions I want Canadians to know that people with Down syndrome are hardworking, they make great employees and we must be included in all aspects of society I love my life because I work well with others and I love spending time in the community I have an extra chromosome and I am proud of it It makes me sad that people think we are suffering and that we need to be fixed

We are not suffering and do not need to be fixed I asked my mom how I changed her life She said that I have introduced her to an inclusive and diverse community My mom said that I have taught her joy And also that she now has met lots of great people who she would have never met if it wasn't for me

I am unique because of my ability to dance I love to dance, I love meeting new people who share the same passion as I do I love everything about dance I love expressing myself I have a larger than life personality and I want to share that with everyone

I bring a lot of joy and I also love being present in the moment I want Canada to know that people with Down syndrome have the same hopes and dreams as everyone else I want Canada to know that people who have Down syndrome are equals and are people first All of us are valued people in the community and in society I can dance, I can act, I can sing and I can easily learn some household chores

I can be helpful with others who might need help I live on my own, and I take transit to get me to where I need to be I have a wonderful girlfriend named Marianna, I love her SO much and we want to get married I am a professional actor When I am with the other actors, I am high energy

I am supportive for them, and like to cheer them on I want to tell people that we are capable of doing things that other people can do even if it will take more time I am important because I am a regular citizen I have a job that provides service to my employer and my community I can help others and I can accept help from others

Those are important human transactions Some people don't know what Down syndrome means I can help get rid of myths or misinformation by simply being myself I can teach people who don't have Down syndrome what it is like to be in our shoes I have an intellectual disability but yet I am like everybody else

An intellectual I accept who I am I can make a difference in this world

I already am I do this by advocating for people with Down syndrome, but also for all people with disabilities I am involved in my community I volunteer at my church, I do bible readings, and I sing in the choir I am a working woman

I really like my job I want to teach other self-advocates to speak out and to believe in themselves I am unique because I can teach others about what it is like to live with Down syndrome and to teach others to be accepting of people with differences We are all human beings with feelings We have abilities

We set goals for the future We really are just like everyone else Our society has lots of different people And lots of diversity And we really need this to make a great world

We need people to respect one another So having a different ability and showing people what I can do is very important to me If people in society see me out in my community working or having fun, or volunteering and contributing That will make people more accepting and open to people who are different from them I work in a day care And when I think about what I am teaching those little kids at day care I do think about society These are all things I think I teach everyone just by being a good example

I am very much preparing the next generation to be better citizens I am the only Janet Charchuk there is I Googled myself, but there is only one me! So I need to be the best me I can be Thank you! I help society by running my own business I help people get their photos and video into digital form

I also do public speaking whenever I am given the opportunity Every year the University of Lethbridge asks me to give a presentation about Down syndrome to their Kinesiology class and sometimes also to the student teachers It makes me feel so good to think that maybe my presentation will help these students realise that people with Down syndrome are very valuable to society I hope new parents think of me when they get a Down syndrome determination As you can tell, I love my life! I am important because I am just like my family, I am a true part of it

My family and my friends do not look at me as disabled They look at me as a person and they don't treat me differently and that's why I am important to them When I do things, I impact other people when I do something new They follow me because they look up to me and they know if they need anything – advice about anything – they can come to me I am a very caring person, and I like to help others be the best they can be

I want others to not hide their abilities If you know you can do something, do not be afraid to show it You have to believe in yourself and do not be afraid This is important I want Canadians to know that people with Down syndrome are not different, We are just like you

So please do not think we cannot do things because we will surprise you We can do so many things We believe in ourselves and want you to believe in us too! If less babies with Down syndrome are being born, Would people with Down syndrome still feel comfortable being out in their communities? My hope for the future is that people with Down syndrome are a very important piece of our country I hope that people with Down syndrome can go into their community and educate and advocate I want the world to be a more accepting place for babies and people with Down syndrome

Only one-quarter or 25% of people with intellectual and developmental disabilities have jobs My hope for the future is to have the supports and training programs in place so that all people who have Down syndrome and other disabilities can have job training that they need for being in the working field All nurses, doctors, and teachers should be educated about Down syndrome They can help us and show that we are all equal The world needs variety in every sort of living thing It is the same with people

We all get to contribute I also want families to be given all options if a woman is pregnant with a baby with Down syndrome Doctors should not make the decision They should give information to the family so they can make the best choice for them I would want to say to the people: Change your definition of normal! make it bigger because we all fit, we all belong, we all contribute

Well, my hopes for the future are: that all people with disabilities have the career of their choice with equal pay, I want all new mothers to be educated, And for all Canadians to know accurate information about Down syndrome, And last, I want people to be more accepting of disabilities My hope for the future is that people with Down syndrome are seen as people first You should see them as a person with a lot to contribute and a valuable part of the community Respect us, yes, and see our abilities People need to see our strengths and abilities and not think that we are suffering

Because we're not I was given access to resources that helped me start my own business in the field I love I hope that all people with Down syndrome are given opportunities to find a job they love We do not want to be given labels and limitations My hope for the future for people with Down syndrome is that people can see that we can all do anything we set our mind to even if we need support

We are all unique in our own way I want to see more people with Down syndrome finding something they are good at and never give up I want ALL people to believe in themselves So as you can tell, we want to make an impact on the future for all people with Down syndrome We are advocating for change

We hope that when families find out their unborn baby has Down syndrome their doctor will give them fair and balanced information We are living examples of how great life can be with Down syndrome and I hope we have proven that to you!


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