How a film can pull the rug out from under you.

The early months with Wade had their ups and downs but most of that was due to fact that we were new parents and were working this thing out as best we could. Down Syndrome played its part but only in the practical hiccups that we had along the way. There were more doctors appointments than usual, more information to understand and more time spent working on his physicality to help with his development. The thoughts I’d had during pregnancy about what it would mean to raise a child with DS didn’t change after he was born. Wade was happy and healthy and Down Syndrome was not much of an issue for us, luckily. I felt validated that all of the research and mental preparation I had done had paid off and I was already realising that Wade was capable of surprising things…

Then….

When Wade was 5 months old, I watched a Spanish film on SBS called “Me Too” DSV had posted about it on their Facebook page. It was on at 9.30 and I seriously doubted my ability to stay awake past the first 5min. Well, I not only stayed awake, I had a profound experience watching it and was incredibly emotional all night and most of the next day.

The film told the story of Daniel, a 34 year old man with Down Syndrome. He is intelligent, educated and high functioning who has a job and a degree. He falls in love with his co-worker Laura who does not have the condition and cannot give him the relationship he wants. Daniel is funny, caring and loving. However he straddles two worlds and doesn’t really fit into either. Laura is an emotionally damaged and highly flawed individual. The relationship that develops between Daniel and Laura is deep and real, but ultimately, it could not progress because Daniel has DS. It was incredibly moving for me. To me, Daniel seemed the perfect partner. He is grounded, self-aware, hilarious and incredibly caring. In my mind, the only reason he could not have a relationship with the woman he cares very deeply for was simply because of the number of chromosomes he had.

Daniel is very self-aware of his condition and also of the extent to which he is different to others in society. At one point in the film, Daniel talks about his education and says that his mother always read to him and when she realised that he was listening, she would continue to teach him things about the world. I should have been happy and inspired by this but my stomach turned and I sobbed uncontrollably. I imagined this mother setting out to teach her son everything that she could and to make him as educated and aware of the world as possible and achieving enormous success in this. However, the result was a man who understands what it is to live a “normal” typical life, is capable of living that life but is also aware of the fact that he will never be accepted as normal by those around him purely because of DS. I couldn’t escape the feeling that if he wasn’t so educated and capable, he would have been happier with less disappointments and feelings of discrimination. It affected me deeply. I felt damned if I do and damned if I don’t.

I realised that I had never given much thought to the complexities that arise as someone with an intellectual disability faces adulthood and works towards an independent life. I have no experience in this area and I’ve never spent any real time with adults in this situation. I became worried that I had been deluding myself again about how equipped I was to deal with this. That I had enthusiastically launched myself into the role of advocate and defender for Wade without having any idea of what I was in for in the future. I became really worried about how to balance the responsibility to teach him everything he is capable of learning, and the need to protect him from the really crappy sides of human nature. I know that these are the worries that every parent faces with their children whether they have a disability or not. Yet, watching that character being so deserving of love and, through no fault of his own, unable to have it, broke my heart and it all seemed so incredibly unfair.

Another challenging aspect of the film for me was the theme of intimacy. Daniel watches porn and thinks about sex. He is a man like any other in this respect. I feel uncomfortable about this, not because I have an issue with someone with a disability having a sex but, like any mother, I struggle to imagine my son as a sexual being in the future. It makes me want to put my fingers in my ears, close my eyes and go “la, la, la, la!”

The notion of adults with a disability having a sex life feels like a taboo topic. My liberal, open mind wants me to be cool with it but, in reality, there are a few sides to the argument that I struggle with. Let’s face it, until it became relevant to me and my life, I’d never given it much thought. In the film there is a young couple, both with DS who are in love but her parents won’t allow them to have a relationship. Louisa and Pedro live less independently than Daniel and are a bit younger, in their mid 20s. They run away together and Daniel finds them at a hotel where he shows them how to use condoms and Laura ensures that Louisa is not doing something that she doesn’t want to do.

I don’t know what I would do as a mother in the same circumstances. It would make a difference whether you have a son or a daughter, I think. The problem with sex is that there are so many issues surrounding it, that it takes a certain level of maturity to navigate it safely. Unwanted pregnancy, sexually transmitted diseases and issues surrounding power, control, exploitation and possible abuse are but a few. I guess that I am ok with the idea of Wade wanting to have a sexual relationship (aaahhh!) but I also feel that it would require supervision or overseeing to a degree which is not really possible. I guess it will be up to us to teach him right from wrong on this issue. And here I am, returning to the same answer every time. Each time I think that I will have a problem unique to DS, I realise that it is a problem that every parent will have with their children. I am certainly not the first person to look ahead in their children’s lives and wonder if I can protect them from harm. The big difference comes from the fact that the consequences of getting it wrong in this case could be a lot more dire. There is a 35-50% chance of an offspring having DS if one of the parents has DS and higher again if both do. In fact the pregnancy will most likely end in miscarriage. On top of that is the issue of the couple’s physical and intellectual ability to raise a child especially if it has DS and some of the associated health risks.

As much as it breaks my heart, I know that Wade will never have children of his own.

I wrote a lot of this post at the time because I was so moved that I had to get it down on paper. Looking back over it now, I don’t feel as despondent. I know that people with DS find love and marry all the time but I also understand that shitty things happen in life… to everyone… all the time. I’m sitting here trying find the positive spin, the words that will inspire but sometimes there are thoughts that are hard and frightening so I will choose to acknowledge it for what it is and keep the ideas in the back of my mind. That way, when times get tough in the future, maybe I will be a little bit prepared because I have thought about it before and felt a bit of the pain already.

Next post will be happier, I promise.

Ok, here’s a cute photo so I don’t feel like I’m leaving this on a sad note…

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14 thoughts on “How a film can pull the rug out from under you.

  1. I too was incredibly affected by that film and can relate to your feelings. I found the irony of Laura being portrayed as the ‘normal’ character sardonically funny and sad too. The film haunted me for days.
    With Jack being 12 I am thinking about the subject of intimacy as more – ‘around the corner’ now and I am surprised o find that my desire for Jack to experience a loving relationship that he can cherish (and yes that will come with sex attached) now outweighs my fears about ‘the dark side’. We will take it one step at a time – just like everything else.

  2. Growing up with my sister having Down syndrome I can completely relate to so much of this post. Sometimes I used to think I understood where my parents were coming from on different issues (as we have not always seen eye to eye when it comes to my sis!) but now that I am a parent myself as well it seems to have expanded my understanding/thoughts 10 fold. You’re right, the thoughts you are having are the thoughts of a parent full stop, not a parent of someone with DS although there may (or may not) be different considerations in terms of education or support when the time comes for whatever reason 🙂 My sister is very independent – in comparison my sister in law has an intellectual disability which in her case means she needs help dressing, showering, chopping up food, etc. I often compare the two and wonder who is better off? Being oblivious or being very aware of your own difference? It astounds me that “disability” is often seen as an overarching blanket category for everyone inside.

    • Yes, it’s a theme I keep returning to that parenting is parenting no matter whether your child has a disability or not. Thanks for your feedback, I am really keen to read about the experiences of adults with DS and their parents/carers.

      • No worries. My mum used to be on the committee at DSV many moons ago and has spoken to lots of new parents (and still does sometimes). If you’re interested I’m sure she’d be happy to chat, although it seems like you are already well connected with other parents and so on.

  3. My ‘smack in the face’ moment came when I read about boys with Down syndrome not having kids. It was a fact that I already knew but on this particular day I burst into tears for my little boy who always plays ‘the dad’ when he and his sisters play with the dolls. The moments that I get upset are usually totally unexpected and a complete shock to me because I don’t really feel sad about ds most of the time. How can I? My boy is wonderful!

    • Yep, gets me every time too. I imagine it’s the same feeling my parents get when they think of my science degree gathering dust in the bottom drawer!

  4. Hi Leticia, It is interesting to get your perspective on “Me too” from a parent point of view. I don’t have a child with Down syndrome but have been around disability for 30 years. I loved this film as, to me, it was about possibility. I also thought the relationship between Daniel and Laura didn’t work out because of her issues, not his, in that when he’s on the train at the end of the film, he chats up another girl….he moved on. So it’s interesting to read your take on this.
    It is true though, that many people with Down syndrome, and other disabilities too, straddle two worlds; we are not yet a fully inclusive society and I sometimes wonder if we ever will be. We teach people to achieve and be all they can be, but there are still many areas where limits are placed on what is possible; relationships being a particularly contentious issue.
    There are many people with disabilities who have learned well and achieved much, so that they don’t see themselves as one of “those people”. And why should they? But to have a sexual relationship with a person who doesn’t have a disability has many pitfalls. Equality, power, control, common interests and life experiences we all struggle with but in the world of disability there seem to be greater inequities.
    I love reading your blog and the joys and the challenges of life with Wade. I guess if we figured everything out in an instant, life would be pretty boring.

    • Absolutely. Laura was definitely a train wreck and he was better off without her but it was pretty raw to watch it at the time. In my mind she would throw herself at anyone behind a dumpster but wouldn’t touch him. She probably respected him more than the others but still, the difference was stark for me. I loved that film even though it floored me. I think about it often and realize that it has galvanized a few opinions for me. Glad to get your take on it. Does DSV have a copy? Someone was asking where they could see it.

      • We don’t have a copy but I think it would be good to get one. It’s mentioned twice in the last Voice. It has really impacted on me too and I’ve read a bit about Pablo Pineda who plays Daniel. He’s studying to be a Special Ed teacher having completed a university degree already. He’s one of my favourite examples of “all things are possible”. There are some You Tube videos of him giving interviews and talks. I Think I’ll try to get a copy of Yo, tambien.

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