The best wedding I have ever been to?
Last Saturday I had the privilege of photographing a remarkable wedding. It was remarkable for a bunch of reasons – the first being that it wasn’t a wedding at all! This was the Covid-delayed celebration for a couple who have already been married for two years. So: no ceremony – only group photos and party.
But it was also because the couple of the hour/two years are James & Heidi Carter. Both of them have an extra chromosome #21: they have Down’s syndrome. And Heidi especially is well-known, under her surname of Crowter, as an advocate and campaigner on behalf of people with Down’s syndrome. You may well have seen her, or the couple together, on the telly or in the paper. This was a bit of a celebrity wedding!
Heidi and James are in their mid to late twenties. In many ways they are just like any other young couple – or at least any other young couple who are deeply involved in high-profile campaigns, including taking the UK government to court. Media attention and invitations to speak at major events are not part of daily life for most of us, and Heidi has achieved a great deal already in her years on earth.
But of course, media attention and “achievements” aren’t the real measure of success, are they? Heidi’s dad’s speech hit the spot subversively: “How many British people are happy with themselves, with their lives, with their ability to make friends, to enjoy their community?” he asked, and pointed to the fact that the percentage of people with Down’s syndrome who will say “Yes!” to those questions is vastly higher than those without the condition. “It’s harder for us ordinary people – and it’s good that our real worth isn’t in our achievements because most of us will never achieve what Heidi and James have!”
Stephen is quiet-spoken with a gentle humour – and the underlying cold steel of a dad who knows every argument in defence of a daughter who has been mocked because of that extra chromosome.
On the day, James and Heidi were clearly having an amazing time. Already married for two years, Heidi spent the night before the celebration back at her parents’ place. I got there while the bride was still getting her hair done, and saw and photographed the reaction to the arrival of the flowers.
The bond between Heidi and younger sister Suzie is almost tangible. Sisters are like this more often than brothers, I think, but these two are about as close as it gets. I feel it as I watch and photograph Suzie doing Heidi’s make up; I am privileged to see something so intense.
One difficulty I had as wedding photographer on the day was the speed with which the bride moved around – changing lenses and even focussing fast enough was noticeably harder than usual. There is an energy and enthusiasm to this woman which can leave others rather breathless!
If Heidi is known for her public speaking and advocacy, it was James who shone in his speech at this celebration. His brother and sister and brother-in-law were together “the best man” – in part because none of them relished the thought of speaking to the best part of 200 people on their own. James spoke confidently and at length, with humour, clarity, seriousness and a total command of the floor, both in reading what he had prepared and in ad-libbing. The hotel’s maître d’ for the day said that the speeches were not only by far the best he had ever heard, but entirely different from anything he had ever heard. “So real, so direct, so funny, so thankful.”
That will be in part because James (and Heidi) have little filter. Few bridegrooms thank the guest who “I once wee-ed all over when I was little”! That was part of the magic. Unfiltered bluntness in such stories, or heard in heartfelt thanks to different people present and to God for bringing us together – it makes for a wedding which is earthy and human and spiritual and joyful.
Unsurprisingly for a couple who share a genetic condition and who campaign on behalf of others who share it too, there were a significant number of guests who have Down’s syndrome, together with their parents and carers. One could sense that the event was more than just a wedding; here was a celebration for a whole community. And it was a gathering where people from that community were accepted and their presence enjoyed just as they were.
Heidi’s campaigning blog is called “Living the Dream” and in some ways the day was a statement that, yes, for people with DS, being married and living independently may be more than just a dream. Among the guests were other young people who live with various challenges, but who have dreamed and achieved in all sorts of areas. This felt like a day for all of them. Together, the joy was more infectious than Omicron!
That joy was perhaps most visible on the dance floor. I think it is a good generalisation that people with Down’s syndrome enjoy music and dance; this was the most banging party I have ever been to. I spoke to the DJ before things kicked off. “Have you been given a full set list?” I already knew the answer: “Yes – and the best party set I’ve seen – the floor will never empty!”
And full it was. It wouldn’t be right to share the images of individuals without permission, so here is a shot of Heidi and James’ first dance. Ed Sheeran’s Perfect. It was.
You know what they say about dancing as if nobody is looking? That is how people with Down’s syndrome dance. You may see the Macarena done more tidily, but you will never see it done more joyfully.
Perhaps being able to dance is an “Achievement” in our “normal” world, and if we have two left feet, we give the floor a miss, or are desperately self-conscious if we do get up. Strip away the pretensions and achievements, enter the world of people with DS, and suddenly the floor is totally yours. Intoxicating!
Why such joy? What were the ingredients that made this wedding so special?
First, the degree of dependence. Special needs. True, Heidi and James live independently of their parents, but Stephen and Liz and sister Suzie are still very much involved, and the couple have plenty of support including staff who come in regularly. Some other young people at the wedding have greater needs and may never achieve the same level of independence. Support and care were visible all around.
Why should that lead to joy? Because success that has come through a broad team effort is more likely to lead to a great party than the success of a self-made man or woman. Because the posing and posturing and one-up-manship of “normal world” rites of passage has no place in the Down’s syndrome community. And because the need to support and care has had a transforming effect on the carers.
I am not romantic about Down’s syndrome or any other condition that can effect intellectual or physical development. For many of the parents and carers present at Heidi and James’ wedding there have been some very hard times. They can talk frankly about them. But what I heard last Saturday, repeatedly and emphatically, was that they wouldn’t swap their life for anything. That the child or sibling with Down’s syndrome has brought unimagined joy. That the problem is other people and their perceptions – NOT their child. And that caring and supporting have had an amazing effect.
I have a colleague at Affordable Granite whose aunt has Down’s syndrome. She put it like this: “Our family would not be what it is if it wasn’t for my auntie.” It was that kind of attitude and those kinds of people that made the wedding so exhilarating last Saturday.
Following dependence and support comes gratitude. The self-made do not need to thank anyone, they only have to preen. But if you genuinely know that you are where you are because of other people’s commitment, help and hard work, you say , “Thank you!”
For Heidi and James, that gratitude starts with thanking God and flows out to thanking everyone who has helped them. They have prodigious memories for everyone who has helped them, and big hearts in talking about them. Time after time during James’ speech, different people around the room were wiping away the tears as they felt the gratitude. How many wedding couples in their late twenties invite their TAs from all the way back at primary school? I didn’t see those ladies without a smile all day!
I drove from London to Coventry on the morning of the wedding. As a wedding photographer, if I travel on the day, I tend to leave early enough to be on time even if my car breaks down on route. I started working at 11.00 am, and was still at the party taking pictures at 11.30 pm. It was hard to drag myself away. Not because I needed more shots but because it was so intensely joyful I just couldn’t go, despite nearly dropping with tiredness.
I do not want to disrespect other weddings I have been to or photographed. Every wedding is special, marriage is important, and I try to honour every couple and serve them well with my camera. But of all the weddings I have attended or photographed, this one stood out. That mix of un-self-conscious joy, of dependence and freely-given support, of gratitude and thankfulness was a taste of heaven.
Heidi and James are involved in the campaign “Don’t Screen Us Out” which seeks to challenge UK policy on abortion up to birth for babies found to have Down’s syndrome through prenatal screening. The boast of countries like Iceland and Denmark that Down’s syndrome has been eradicated is a death knell.
The point is that it isn’t just a death knell to babies with Down’s syndrome. It is a death knell to the modelling within society of the cycle of dependence, of non-self-made-ness, and of gratitude and joy that seem to be the special territory of families where a member has this syndrome. There is a purpose and place for human lives that have some special needs. Where those lives are snuffed out, society is impoverished. Hard economics – pure capitalism – has little space for the “net unproductive”. But then, it can’t deliver much pure love, joy or peace either.
Before I was a professional photographer, I was a Christian minister, in the UK and in Brazil. I attended and officiated at a lot of weddings. I still have the same Christian convictions and faith, and I try to be the most respectful of photographers at marriage services. (I sing the hymns, too!) Given all that, it’s not a surprise when my musings occasionally get a bit theological.
For Christians, marriage is a picture of the relationship of Jesus Christ and his church, his people. That relationship is one of self-giving commitment, help and support from Jesus, and of dependence, of trust and of gratitude from us. The scale of our need and of his self-giving is infinitely large, believe me. A Christian is not a good person, a self-made success, who has pulled themselves up by their own bootstraps. There are really no such people, in the grand, eternal scheme of things. Christians recognise their own weakness and need, and in Jesus Christ have found the person they can depend on for help. “Heaven” will be the everlasting party of the grateful dependents.
If that is marriage, and if that is Christianity, and if that is heaven, it is not surprising that a wedding on earth which overflows with acknowledged dependency and huge gratitude makes you feel like you are already there.
I said that I would attend James and Heidi’s wedding every weekend for the rest of my life if I could. Because, in a way, one day I will. You are also invited!
The unique joy of the day drove my thinking as I wrote this blog. So many of us present were pinching ourselves, trying to work out why we could be this happy. Some kind of explanation needed to be found! I had some very good conversations at the wedding itself, and was also helped in my writing by Alison Morley’s lovely blog in which she ponders on the day.
Helping people with physical or intellectual challenges is immensely worthwhile. Some of that help should be in campaigning on their behalf. If you wish to support Heidi’s advocacy work, check out her Living the Dream Facebook page. For a wider campaigning movement on behalf of people with Down’s syndrome, check out Don’t Screen Us Out.