From “Disgusting” to Inspiring… A Couple with Down Syndrome Today Celebrate Their 25th Wedding Anniversary

 In Down Syndrome Community Voices, Down Syndrome News, In The Media, The DS Advocate

Maryanne (49) and Tommy (62) , from Essex, are celebrating their 25th anniversary today. Yet another milestone they were told they would never reach!

At the beginning of their romance

You probably know their story. They’ve been featured on TV and in various newspapers many times, as well as on all social media platforms. They were the first couple with Down syndrome to get officially married in the UK and they certainly are the first in the world to reach their 25th anniversary! They so deserve it. The fact they made it to the altar altogether is a miracle in itself.

Indeed, society was completely different 25 years ago, social reckoning wasn’t even in its infancy, and the mood surrounding their wedding in 1995 was a far cry from the limelight Heidi and James Carter were basking in 2 weeks ago at their own wedding, with over 10,000 well-wishers attending the ceremony on-line.…

But back then, Maryanne and Tommy’s wedding was only broadcast by their local TV network and newspapers and attracted a lot of negative attention, what we call “trolling” nowadays. As a matter of fact, their relationship was very frowned upon long before they tied the knot, and the wedding announcement seemed to have broken the camel’s back, the catalyst that showed up the deep-seated views held by the “mainstream” population but also and very vehemently by people who, you would have thought, were on their side:  other parents of adults with a learning disability!

Maryanne as a toddler

The one who took the brunt of all the hate calls and hate mail was Maryanne’s mother, Linda Martin. She was also the one shielding the bride and groom from it all. It was quite a blow to her, she really struggled to understand the rationale of it all. Here she was, rejoicing to present her daughter with a most unlikely gift in that era and yet one that most young women dream of: a big, white wedding to the love of her life with all their relatives and friends celebrating with them, and yet, she was vilified by the ones who should have held her high, who should have had her back.

Societal conformity and prejudice of the time might explain some of the outcry the wedding engendered. And that is why it is so interesting, refreshing, galvanising and even frustrating at times to be able to look back and see how far we’ve come in some places, or how stalled and entrenched we’ve remained in others. Time-lapse is indeed one of the best measuring tools when it comes to social/legal progress or lack thereof.

Actually, while we’re at it, let’s rewind the time machine by nearly 50 years, when Maryanne was born, when it was common practice to refer to our children as mongols and make sure they were ostracised from society as soon as possible, i.e. when parents were strongly advised to leave them at the hospital and go back home empty-handed rather than bring home such a burden to the whole family. A time when Linda reminisces she was shunned by not only her in-laws but by all the medical professionals. She was offered no support whatsoever when she refused to leave her baby behind, not even how to breastfeed! She was only 21 years old, and Maryanne was the first of what would eventually be a brood of 4.

Maryanne, whom everybody was lovingly referring to as “baby” when she was in the womb, was instantly stripped of humanity when her condition was known, and promptly regressed to

Maryanne as a child

the status of “mongol”, a word encompassing tragedy, burden, calamity, embarrassment, something to get rid of asap. A narrative, mind you, that many can still relate to in 2020, except that it happens prenatally as opposed to postnatal: upon a prenatal diagnosis of Down syndrome, babies inevitably and matter-of-factly revert back to the status of  “foetus” and most women are offered, if not subliminally then overtly, an expedient termination with support, whereas support is rarely ever considered for women who choose to carry on with the pregnancy. So, not much change in 50 years except for the backdrop. A different type of gas lighting but gas lighting all the same, whichever way you look at it, whether you like it or not. Fact.

Be that as it may, Linda stuck to her guns and stood up to all the naysayers, Maryanne’s father included. She recalls thinking while holding her first-born “I don’t care what she achieves. I just hope she finds somebody to love”. Little did she know that her wish would come true 19 years later.

She always made sure to treat Maryanne just like any other child as much as she could. Since the option of going to a mainstream school didn’t exist back then, Maryanne attended a school for children with special needs and at 19, she started working in the kitchen for a local training centre for people with special needs. At long last, she had found a place she really enjoyed going to and blossomed. It is also where she fatefully met Tommy, 13 years her senior.

It was clear from the beginning that these 2 hit it off. And yet, their upbringing couldn’t have been more different. Maryanne had always been showered with love and support throughout her life whereas Tommy had been in care for the past 20 years since both his parents had died and he had no other relatives. To make a long story short (and there are plenty of articles about it), Tommy proposed (not with a plastic ring he got from a toy-vending machine as it is often purported by the media,  but with a pink, heart-shaped ring that he chose at the local jeweller’s), and Maryanne readily accepted. She was elated and they had a massive engagement party. Four years passed, during which time Tommy would spend every other weekend at their house. Linda wanted to make sure their love wasn’t just a whim and that they were in for the long run. People from outside their family circle were keeping a hawk eye on their relationship but remained quiet, as long as things didn’t progress any further.

Their engagement party

Linda being Linda, however, couldn’t see a single valid reason why Maryanne and Tommy couldn’t have a “proper”relationship and decided it was time they finally got married. When the wedding plans became public knowledge, hell broke loose and she was vilified.

Her crime? She was a bad mother to let her daughter (with special needs!!) get married. It was disgusting.  What did she think she was doing nurturing something like this? And worst of all: How dared she give ideas to their own children that they could get married? She was certainly opening an avenue to people with Down syndrome that had never been explored, one that supposedly well-intentioned people thought was dangerous, full of pitfalls, one that no responsible parent should allow their beloved child to venture on.

Her defence? “I would have felt like I had failed as a mother if I hadn’t acknowledged that my daughter was in love with somebody and that she wanted what every girl wanted”.

Their argument? What if it doesn’t work?

Her reply? What kind of a question is that? People don’t get married in case it doesn’t work, they get married because they love each other! If it doesn’t work, we’ll deal with it, just like any other couple.

Two radically-opposed perspectives.

Once again, Linda the pioneer, Linda the trailblazer, stuck to her guns. Not only did she go ahead full steam with the wedding plans, but she gave them the full nine yards with all the bells and whistles and even booked them into a beautiful hotel by the sea for their honeymoon: Maryanne wanted a wedding gown similar to Cinderella’s? Her talented dressmaker of an auntie handmade it for her with a bonus tiara. Maryanne wanted a big wedding reception? 200 people attended and partied for 9 hours. To this day, the same 200 people remember that wedding as the best wedding they have ever attended.

The detractors were not impressed but sniggered: “It won’t last”

Linda became Tommy’s legal guardian,  took the newly-married couple under her wing and into her home for 7 years. She taught them the basics of cooking and cleaning, until Maryanne and Tommy moved in together next door and where they still remain 18 years later.

As the years have gone by, and as they renewed their vows at their 10th, 20th and today 25th anniversary, the doubters have not only dwindled away but the tide has completely turned: Lindi Newman (their full-time carer for the past 17 years who also happens to be Maryanne’s younger sister) keeps receiving messages (on the Facebook page that she set up 5 years ago) from parents of children with Down syndrome saying how inspiring their story is and how much it is giving them hope for their children.

Now, there’s something very important you need to know. You may think that living together and loving each other is only reserved for those who are not only verbal but also high achievers. You couldn’t be more wrong. Hear this: neither Maryanne nor Tommy can read or write, they can’t really tell the time, they don’t really have a concept of time even if Maryanne understands the days of the week and roughly knows whether it’s morning, afternoon or evening, they need help with cooking, ironing, cleaning, medication. They also need support with access to the community, go bowling, go to the cinema, go the pub. Although they could easily do the latter part independently, they don’t feel safe to do so anymore and won’t unless Lindi is with them. Why? Because the ugly truth is they were bullied in the street too many times and seriously enough for Maryanne to suffer a number of breakdowns and even become agoraphobic for quite a while.

So,

Maryanne with mum Linda & sister Lindi

1/ How do they manage on a day-to-day basis? They currently have 24-hour support provided by mother Linda and sister Lindi (who lives on the same street, is married, has 2 children and another job, and also manages their Facebook page and all things PR).

2/ What is the secret of the longevity of their marriage? They take each other at face value and have no expectations of each other. They help each other. They give each other cuddles and kisses all the time. They say “I love you” to each other several times a day. They enjoy each other’s company and love a good party. They bicker just like any other couple(usually because Maryanne can be a bit jealous) but it’s very short-lived and they don’t bear grudges. I guess they instinctively know how to zoom in to what’s essential. In a nutshell, they walk the talk. Food for thought, wouldn’t you say?

3/ What does the future look like? The sad news is that Tommy was diagnosed with Alzheimer’s six years ago. A condition that Maryanne has been shielded from until now. Until it gets to the point when he  needs to be moved into special care. They will cross that bridge when they get there. No need to break Maryanne’s heart prematurely. You see, when she was 12, her little brother, Philip, died aged 10. Being only 12 at the time she took it very badly. So, all she needs to know and understand is that Tommy’s brain is getting older and that is why sometimes he doesn’t recognise her and tells her he doesn’t love her anymore. That’s when she calls her mother, and Linda talks to Tommy and calms him down. For now. One step at a time.

And today, they’ve just had a fabulous photo shoot and are getting ready to renew once again their wedding vows and party away for their silver wedding anniversary.

Would Linda have done things differently in hindsight? Well, she knows too well what tragedy looks like. She  had many in her lifetime, but she wants you to know that bringing a baby with Down syndrome was never one of them.  As for allowing them to get married,  “I wouldn’t change a thing! It’s the best thing I could have done for them! I wish I could have found a love like it in my life, because it’s a very honest, true and beautiful thing. And everybody deserves to be loved and the chance to be happy.”

Fun facts:

Both Tommy and his mother-in-law, Linda, share the same birthday which is….March 21st aka World Down Syndrome Day!!!
Tommy is a massive Elvis fan and his favourite songs are  Love me Tender and Blue Suede Shoes which he loves to sing to Maryanne every evening when they cook together.
Maryanne’s favourite thing to say, to this day, is: “This is my husband, Tommy”.

Not so fun fact:

The only picture of Tommy before they met

One day, about 5 years ago, somebody pretended to befriend Tommy in the local shop and stole his wallet. So, Lindi posted an outraged appeal on her Facebook page. That post was re-shared worldwide 138k times! https://m.facebook.com/photo.php?fbid=10153679060904756&set=a.10150209949889756&type=3.

This is how their Facebook page was set up, to let people know how they were faring following that ordeal. The culprit was eventually arrested thanks to the help of 2 total strangers who also bought Tommy a new wallet, but the damaged was done and Tommy and Maryanne didn’t want to go out on their own anymore.

Their FaceBook page (over 66k followers)! https://www.facebook.com/maryanneandtom/

Click here to listen to https://podcasts.apple.com/gb/podcast/committed/id1382244741?i=1000415205499&fbclid=IwAR07-ZQeKL5pZGY_i_WfRsWv9uCFZ5jdzVvtgkwV-6XJUh6MsxgMPvesq9c

Article written by Denise Humberstone for MCC following her interview with Lindi Newman, Maryanne’s sister.

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