When Doctor's Said No, The Bythewood's Said Yes

Abortion is a common go-to for those in the medical field. Within the Down syndrome community, many parents hear it suggested one time too many. "Your baby has a 90% chance of having Down syndrome. We recommend abortion.” “There are several Down syndrome markers present. We recommend having an abortion.” “Down syndrome means an unhealthy and difficult life. We recommend abortion.” This is a huge concern for those in the disability community and an issue many are trying to correct by educating medical professionals and the general public.

Instead of taking the doctor’s advice when the Bythwood’s were told there was nothing they could do for their baby, they went a different route. They decided to lean on hope and turn to their religion.

Discrimination, Genocide, Advocacy and AwarenessLindsay RobertsonJune 29, 2020discrimination, abortion, AwarenessComment

Heidi and Aidan's Case to Change UK Abortion Law

As you know, the law in England currently allows you to terminate a baby after 24 weeks, and indeed to moments before they are born, if they are found to have a “serious disability”. Serious disability is not defined by the law and has been interpreted to include Down’s Syndrome. Heidi, a young, capable woman with Down’s Syndrome wrote to you. She has said that she finds the law “deeply offensive” and is launching a legal battle against the government with regards to this. Your Department of Health and Social Care said; “any decision to terminate must rest on the judgement of the women and her doctors”. As I see it, there appears to be two predominant voices within this debate; those who believe it is an issue of women’s choice, and those who believe it is an issue of the human rights of those with disability.

Genocide, DiscriminationAnonymousJune 15, 2020awareness, advocacy, discrimination, law and policyComment

An Entire Community In Mourning

As a member of the Down syndrome community, I’m heartbroken and outraged at the same time. As a mother, I’m scared of the world my children are being raised in. As an individual who cares, I’m pissed off that there isn’t more awareness being made focusing on these three kids. Why are these cases not national news? Why don’t they get the same attention as any other murdered child?

For those reasons, I’m going to share the information I’ve found on two of these cases below (you can find information on Kylee Willis here – Adam Hughes’ preliminary hearing is scheduled for June 19th, 2020. He has been charged with “assault on a child causing death.”) and the link that includes the contact information for those working on each case as well as examples of the letters that you can send if you’d like to reach out and help make a difference.

Discrimination, Advocacy and AwarenessLindsay RobertsonJune 1, 2020Down syndrome, awareness, advocate, discriminationComment

Chromosomes, the Definition of "Human," and the United Nations

To what extent do prenatal screening tests, which can assess the probability of having a fetus with Down syndrome, affect humans’ quality of life in the world? Can these screening tests tell us how much a fetus will not be afraid of telling the truth in the future? Can they tell us how well a fetus can have acceptable behavior in the future? Can such screening tests be 100% accurate in determining what kind of fetuses will not murder others, steal things, or cause corruption on planet Earth? Which of these screening tests can tell us how the quality of life of these fetuses, who are human beings, will be like or what kind of fetuses will live in a way that they will never disgrace human dignity? Can these prenatal screening tests indicate how the fetuses that are considered defective by carrying out these tests and based on their results would live and how they would influence other people’s lives and can they compare these fetuses’ impacts on the world around them with the influences of fetuses that are described as healthy fetuses who are regarded worthy of life in the future?

Discrimination, GenocideDr. Azadeh AbbaszadehMarch 30, 2020genocide, Health, Government Comment

Post-Modern Slavery: Fetal Chromosomal Slavery

The slavery system, today and in its latest advancement, has considered fetuses (future humans) that have an extra chromosome as abnormal and low-rank fetuses (future humans), regarded them worthless, and attempted to commit genocide!

Do you know anything about this genocide? Nowadays, many fetuses, who have an extra chromosome, are killed alive in the mothers’ uteri lest a person with Down syndrome may not be born. This is while research has shown that fetuses having Down syndrome, like all other fetuses, are very likely to feel pain after the 20th week of their fetal lives.

Discrimination, GenocideAnonymousJanuary 27, 2020Genocide, Slavery, Down syndrome, Advocacy, AwarenessComment

American Girl: A Follow Up To Our Open Letter

Earlier this year I wrote an open letter to American Girl with the hopes that they would see how much making a doll with Down syndrome features and characteristics would mean to so many. The only response I received from the company was a generic reply letting me know that they celebrate all kids and are constantly working to show diversity, but they had no immediate plans to create a doll with Down syndrome because they didn’t want to offend the community.

Discrimination, InclusionLindsay RobertsonNovember 18, 2019Down Syndrome, American Girl, InclusionComment

Dear Doctor

When we had Alice, all of the doctors in the hospital were incredibly negative with us. They told us that she had Down syndrome in a very depressing way. They did not congratulate us. They told us they were sorry. They acted like it was the end of the world for us. I would have given anything in that moment for one sliver of hope... but the doctors didn't give it.

As I've met and talked to so many other moms of kids with Down syndrome, I realize that 99% of them had the same experience. This is wrong, and it needs to stop.

Everyone Has A Voice

"This is a common misconception about all kids with disabilities, that they can’t or won’t learn, especially if they are non-verbal. When the most amazing teacher came in to the FLS class last year, she saw these kids as who they really were, and within one year of this new teacher, every single kid in the class grew leaps and bounds. Julia, who also has Down syndrome and had never been able to communicate now was pointing to “yes” and “no” cards, and making decisions for herself. That gave her so much confidence that she soon became the sassiest teenager I’ve ever met, sneaking out of the room when no one was looking and licking folders when she didn’t want to do her class job. But the biggest change was in Josue.”

Discrimination, Advocacy and Awareness, InclusionMallory BlackwellJuly 15, 2019Inclusion, Acceptance, Awareness, Down SyndromeComment

Ninth Circuit Court Rules Student with Down syndrome Can Be Moved to Life Skills Class at New School

The Ninth Circuit Court of Appeals ruled an Arizona school district can move an elementary student with Down syndrome to a public school outside his neighborhood. The student would receive an additional 20 minutes of Specially Designed Instruction (SDI) in an “academic SCILLS classroom” at this new school.

Education, Inclusion, DiscriminationCourtney HansenJune 24, 2019down syndrome, education, supreme court, InclusionComment

Why Your Child Needs a "No Consent" Letter For Restraint and Seclusion

A study of 99% of public schools by the United States Office of Civil Rights found that students with disabilities are restrained and secluded at a much higher rate than their typical peers. The office found that although students served under IDEA make up only 12% of the U.S. public school population, they make up 67% of students who were restrained or secluded.

That’s 70,000 students with disabilities who were restrained or secluded in the 2013-14 school year, for which the last data was recorded. Let that sink in for a moment. And assuredly there’s a lot more incidents that are not reported.

Discrimination, EducationCourtney HansenJune 10, 2019down syndrome, abuse, neglectComment

A World Without Down syndrome?

In August 2017 after a CBS news crew traveled to Iceland a report was released titled “Inside The Country Where Down Syndrome Is Disappearing”. Since the introduction of more advanced prenatal screening tests in the early 2000’s the vast majority of women in Iceland, almost 100%, who received a positive prenatal test for Trisomy 21, also known as Down syndrome, elected to terminate their pregnancy. On average, only 2 babies are born per year with Down syndrome in Iceland. Geneticist and founder of deCODE Genetics, Kari Stefansson, has studied nearly the entire Icelandic population’s DNA and has his own perspective on the advancements made in medical technology.

Patsy Christy: Possibility of Shock Parole

On January 10, 2019, Patsy and Albert Christy plead guilty to wreckless homicide for abusing and neglecting their son, Logan, for 20 years until their abuse lead to his death. Logan was kept in his room with a padlock on the door. The window to his room was shattered, the ﬂoor covered with glass and feces, since he was locked in and unable to use the restroom. Logan had been starved, and kept from water. At the time of his death, he had also contracted pneumonia, most likely from the winter air coming through his broken window. For all of this, Patsy and Albert Christy were each only sentenced to 5 years in prison with the option for parole by the following April.

Odhran Varney: How Medical Professionals Couldn't See Past A Diagnosis

“As he grew older and around 2 y/o he started to have trouble going to the toilet. He would scream in pain and it was glaringly obvious something wasn’t right. We took him to the doctors between the age of 2 and 4 at least 20 times. Always the same answer. He has Ds and constipation was a side effect. We placed our trust in the professionals. I will never forgive myself for that. After multiple trips to the hospital A&E and being made to feel like we were wasting their time. The look and lack of belief in what we were telling them was so evident. Our son was not the weight his age should have been but still it took us 2 years to get a serious appointment to have a look at the problem…”

DiscriminationLindsay RobertsonApril 15, 2019down syndrome, #deardoctor, discriminationComment

The Spread The Word To End The Word Campaign and Why It's So Important

The word retarded first originated as a medical phrase, “mentally retarded,” from the mid 1890’s which was synonymous for slow or delayed. This term was originally used as a replacement for other derogatory terms at the time like moron or idiot. It wasn’t until the 1960’s that this term took on an entirely different meaning used to insult people.

The New Educational Graphics

When you research Down syndrome online, you will come across several images that will catch your eye. They all have the same format: a sketch of a baby with Down syndrome surrounded by manifestations of Down syndrome. The format is not the only thing these images have in common. They all contain at least one piece of outdated, and sometimes incorrect, information, as well as a sketch depicting someone with Down syndrome that is offensive to say the least.

Discrimination, Advocacy and AwarenessKaitlin PepperJanuary 21, 2019down syndromeComment

Justice for Logan Christy: Our Letter Writing Campaign

We cannot change what Logan’s parents did to him, but we can advocate to get what little justice we can for him now.

Discrimination, Advocacy and Awareness, GenocideKaitlin PepperJanuary 14, 2019discriminationComment

Dear Iceland, Meet My Son with Down Syndrome

ICELAND HAS BECOME A TRIGGER WORD IN THE DOWN SYNDROME COMMUNITY.

It began last August when CBS News “On Assignment” reported the birth rates of people with Down syndrome diminishing to nearly zero in Iceland. The headline read: “’What kind of society do you want to live in?’: Inside the country where Down syndrome is disappearing” the short version is this quote:

DiscriminationMardra SikoraOctober 22, 2018down syndrome, save down syndrome, iceland, discriminationComment