‘You’re a Complete Mystery to Me’: Meet My Brother Jamie

For accessibility reasons, I wish the Times would provide subtitles or a transcript of this kind of op-doc.

Marvelous film. Thank you. It expressed so many of my life experiences with a brother who has developmental disabilities and is not verbal. Not many get to live life with someone who loves us unconditionally.

Beautiful, remarkable, stunning. Thank you

What bothers me is the statement, “As prenatal screening tests improve, the birthrate of people with Down has fallen.” Am I reading this correctly, that there are more abortions after a prenatal screening for this? Does it mean if someone cannot get the ‘perfect’ family, they child is tossed away? I was told my child would have Down Syndrome, and the doctor asked when I wanted “the procedure.” My husband and I were dumbfounded; we would love our child no matter what. Ends up the tests were wrong; our daughter is now a clinical registered dietician. I wish there were closed captions for this. With my hearing loss, I could not capture most of the words. From what I could understand, it shows what a loving family this is. Yes, there is the worry what will happen after the parents are deceased. Today, I see there is much more education offered to those with Down Syndrome, many more doors are opened to them and many more opportunities to work and be given independence. Thank you for this beautiful and educational film.

What a piece of art and magic, so full of love. Thank you Alex.

What a lovely film -- thank you. :)

This is such a moving story. Especially the empathy part, which proves he's not "blank". As another commenter here said, he probably just thinks in colors, or notes. Jamie would be happy and proud to know he has touched many through his brother's work, and I know one day he will.

As a neuropsychologist (now retired), I assessed several individuals with Down Syndrome who were developing dementia at the same time as their parents were becoming elderly. There's a great deal of heartbreak for a parent observing the skills they had so patiently trained in their child now disappearing one by one, or in a flurry. I wonder how many people realize how often this happens. "According to the National Down Syndrome Society, about 30 percent of people with Down syndrome who are in their 50s have Alzheimer’s dementia. About 50 percent of people with Down syndrome in their 60s have Alzheimer’s dementia." (https://www.alz.org/alzheimers-dementia/what-is-dementia/types-of-dementia/down-syndrome)

On reading this, I thought about how I might have reacted to finding I was pregnant with a Down's Syndrome child. I'm not a patient person although I curb my impatience as much as possible. I'm not a person who shows much physical affection. I hug my loved ones and hold my baby great-grandkids, but not excessively. I would not make a good mother to a child like this. A child that is wanted regardless of how his fate might be would need a better parent. Jamie's parents are exceptional people in my judgement and Jamie is a very lucky young man.

It seems like Jamie has a good life. But I’m worried about what will really happen to him after his Parents are gone. It seems a little tension might exist between the Parents and other Children. Maybe because Jaime required so much care and left little time or attention for everyone else. And/or maybe the Parents feel the other kids could help more. Obviously, I don’t know. But, he seems happy, and that’s a major achievement. I have nothing but sincere best wishes for them all, and I’d like to see more.

A moving video - I grew up with a neighbor who had Down's syndrome. He was high-functioning, had a job, and even a girlfriend. Even though he was in his 30's, we made a good pair. I was deaf from an early age, and he had absolutely no filter. He would repeat for me what people were saying around us, word for word, swear words and everything. Most people filter or summarize things for deaf people, out of modesty and brevity, but for a kid like me, this person opened a world for me when I was young. I moved out of the neighborhood and he passed away relatively young, but it's interesting how many of my childhood memories involved him hanging out with me.

Down syndrome people were among the first groups of people singled out for extermination by Hitler along with the Jews. This is a fact that ought to be thought about and acted on more than it is.

I'm remembering Mark, a man with Down syndrome who was a member of a church where I used to be the organist. He was in his forties or early fifties then, and so very childlike. He was very often the acolyte, and had the whole routine down (in an Episcopal service, there's lots for an acolyte to do). He knew all the responses, even if we couldn't understand him clearly. If he liked one of the hymns we were singing, he would bellow it at the top of his tuneless voice, and I knew I was doing my job well. If he liked you, you knew it, because he would always hug you. I think to this day that he understood far more of what was said to him than we could understand what he said to us. I was always glad that this little parish opened their hearts to him and gave him something real and important to do. He died two or three years ago, and left us all just a bit poorer for losing him, and richer for having known him.

I have three children, each disabled in their own way (two estranged due to the despicable ex). I am disabled. At the time they were conceived, not only did I not know I was disabled, but genetic tests for what they have did not exist. We're still not sure exactly why I'm sick. At various times, my children have EACH excoriated me for permitting them to be born. HOW could I have done this to them. EACH of them has told me they were not going to have children, so as not to bring another disabled person, who will have the same level of mental and physical pain as they do, into this world. I love children, and I adored my children, but I will have no grandchildren. My children, who love children because I raised them to love children, will have no children of their own. No one to care for them in old age. In every comment here, and every narrative from people with a disabled child. In my own narrative. In every narrative from every person with a seriously, or even moderately disabled child... there is a level of caretaking and worry from the parent, a focus on the disabled child which simply does not exist if your child is not disabled. If you are disabled yourself, it is multiplied. I currently caretake for my 24 year old son. I expect that I shall always have some level of responsibility for him. Unless he marries and a spouse takes over. What of when I am old and can no longer caretake? What happens when I need care myself? There will be NO ONE. This is reality.

I have a handicapped brother. I don't know how he thinks, either. I'm not sure it's in language and how do you think without language? He does better with numbers. He used to ask what people's birthdays are, so he'd have a number to identify them with. I think he goes through life like he's a visitor to a foreign country with a language and customs he doesn't understand well. He, too, loves music. Has he enriched our lives? Yes, of course. Was it at substantial cost? Yes, of course. He needed so much more than his siblings, so he absorbed so much of my parents' time and attention. If amniocentesis could have identified his disability, would I have aborted when pregnant with my own kids? Yes, of course. My parents loved my brother deeply, but his disability brought them a lifetime of grief and stress. When my father was 89 and in the hospital with heart failure, all he could talk about was my brother and his needs.

All very well to say that society can be measured by the treatment of the most vulnerable. But in reality it also could be seen as those individuals consuming services, along with the elderly, that could be directed to other causes, such as childhood illnesses and environmental rescue. I'm 71 and I wonder how many resources should be diverted to furthering my years.

I had a sister with Downs that died last year at age 33. My parents spent their lives making the best life possible for her. Now that's she's gone, the hole left makes us all realize that caring for another only enriches life. It is a scary thing to contemplate the monumental life changing event of having a child with special needs, but truthfully that is true for raising a normal child. Equally as true, is that any person can become disabled after birth by illness or accident. What no one can know is how a person can affect you in positive ways even if they are different.

Although my daughter does not have down syndrome, she is profoundly developmentally disabled and non-verbal. She, however, is not like a person with dementia, as people often think. She knows who we are when we visit her and take her out on excursions from her home. She understands what she knows in very basic ways. We are fortunate to be in California where developmentally disabled adults are supported through our regional center programs. She is in a home where kind loving people care for her and five other young adults. She goes to a day program during the week. Thank goodness such resources are available to her and our family. We have had a few (very few) people who did not understand her behavior and treated her poorly. Our daughter was in a home for about 8 months that was a start up. We visited often and checked up on her health and general level of care. We became concerned about a diaper rash. After our emergency trip to the hospital, the regional staff jumped in with a surprise-visit to the home to discover find more evidence of neglect. The house closed immediately. She has since been placed in a loving caring group home. In her 25 years of care with others, only 8 months has been unacceptable. The rest of it has been extraordinarily loving. When all is working well, good government programs have advocates and systems in place to protect our most vulnerable. I also "believe a society can be measured by its capacity to nurture those who are most vulnerable."

A beautiful short film. It brings me joy to see how Jamie is so well cared for and loved by his family.

This was so moving. I hope Jaime is happy in his new home.

Not that many people today have the family support system and financial well being, that allows them to deal with a special needs child, and not seem at times to short change the others, and the child as well. We have such a child in the family.

The part about Jamie coming over and calming his father made my eyes well up. It makes sense that someone with limited modes of expression would be especially sensitive to others’ moods, and would want to lessen others’ sadness or tension. I have seen this empathetic behavior in toddlers who have few words. They want everyone to be happy. I don’t think Jamie’s mind — or the mind of anyone with severe Down syndrome — is a blank. Maybe he thinks in musical notes. Or colors. Or happy images of clowns. I hope he is happy. I can tell that he is deeply loved, just by the tone of voice of those speaking about him. You are blessed to have such a lovely family, Alex Widdowson.

I've known quite a few people with Down syndrome, and I've read a lot of stories over the years like this, about how the person adds so much to the family, or the narrator has learned so much from them, or they've enriched their lives. To be honest, I still don't get it. Having a relative with Downs just seems sad and frustrating; I'm thinking of a family where the sister of that person seems overlooked, and her mother is trying, like this family, to prepare for the future. I'm glad for this family but I'm also glad testing means I have the option to not be the parent of this child. The message we're hearing now is that parents don't understand the potentials of people with Down syndrome, and aren't being given the information needed to choose life. But I think my experience with these people has given me enough information.

This is a very interesting and important film. Disability, particularly disabilities which affect cognition and physical independence truly challenge liberal democratic societies which overtly stress the importance of reason and autonomy. "Proving" the value of those who have different intellectual and physical capacities usually focuses on their capacities to be productive nonetheless. Jamie's contribution lies in his intuition and empathy . . . . And yet, even his father realizes that while he may find a "safe" place for Jamie to live once his parents can no longer care for him; the world will likely leave Jamie to his own devices: largely isolated and institutionalized. Paradoxically, without true emotional interaction with others, Jamie's capacity ot intuit and be empathic will also likely wither.

My best friend's son has Downs. He is truly a special individual, and I am proud he calls me his Uncle Joe.