*Siobhán Mungovan. Photograph: John Mangan
SIOBHÁN MUNGOVAN has a knack for defying the odds and she’s nervously looking forward to giving her first TEDX talk this coming weekend.
Connolly native Siobhán has recently released her second book, ‘I Smiled Back The Story Nobody Knows’ and this will be among the items to be discussed when she makes her first journey to Rathoath this weekend.
Publicity in the aftermath of the book led to her getting the goal to fulfil the ambition of giving a TED Talk. “It’s been on my bucket list for years, anybody that knows TEDX knows the process around it is like a four leaf shamrock getting in, there’s a lot of shortlisting stages to get through with the publication of my second book the organisers in Rathoath had heard of me and I was contacted to know if I’d like to be a speaker so I jumped at the opportunity”.
‘Ideas worth spreading’ is the slogan of TED which posts international talks online for free. “The subject of the day is it takes a village, whatever your interpretation of is it takes a village is, our talk has to be written around that,” Siobhán explained on the topic for this weekend.
Born with spina bifida, Siobhán admitted that this brought with it “its own host of issues. I have kyphoscoliosis which is curvature from the front and the back, I also have hydrocephalus which is a build-up of fluid in the brain, we all have fluid in the brain but I can’t get rid of mine so I have a shunt system to drain out the fluid, that is the reason as to why I do what I do, I want to share my story to people. I believe in society today that disabled people should be seen and heard, nobody is going to put Siobhán in the corner, I’m giving a voice to the people that may be a bit afraid to talk”.
Me and My Backbone, My Journey with Spina Bifida was her first book, it served as an almost memoir but her latest publication is more in-depth and subject based. “It deals with how disabled people especially women are seen in society, how they are represented in social media and media, I have kidney failure and am coming to the end of life of my kidneys, I’ve been able to stay on 10 percent kidney function for sixteen years, that is very much unheard of because anything under 10 percent you need dialysis, I’ve been fortunate but as any of us get older our kidneys do deteriorate, mine are deteriorating. In the book I speak about grief, we speak a lot about the grief of losing a loved one but nobody speaks about the grief of losing a part of ourselves like if you lost your left arm. In the second book, we talk about body positivity for all individuals, this is something that is taboo especially in the disability community, it is based around a photo shoot I did in relation to my disfigurement, it is a little bit daring and out of my comfort zone but my why pushed me through, it’s not for the glory it’s for the greater good, to teach and educate people going forward, not everybody knows and they won’t know unless you educate them, it’s coming from wanting to teach people because it is okay not knowing”.
She told The Clare Echo, “The real meaning of the second book is how disabled women are seen in society, body confidence, we speak about relationships which is a very taboo subject in society, society believes disabled people shouldn’t be in a relationship because it is dangerous or madness, I do push against that and as you can see I push against a lot in society. Disabled people have a lot of love to give and to receive, I have a partner at the moment who hasn’t a disability, I do believe non-disabled people who get into relationships with disabled people have taken a lot of flak because they are automatically labelled for using that person, who is to say I am not using him”.
Growing up with her parents Noel and Geraldine along with her siblings Shane and Conor, Siobhán “never felt different. I went to mainstream school and college, it wasn’t until I got older and I interacted with the disability community, maybe it is shameful for me that I never interacted with the disability community as an adolescent because I never felt different, now as an adult I’m looking at society thinking it is madness, because someone has a disability doesn’t mean we can’t do something, it means that we do things a little bit differently, I’m 4ft and I will never be 6ft but it doesn’t mean I can’t do things, I have a voice and if there is something up high I will ask you to get something for me”.
At the age of nineteen, she was diagnosed with kidney failure, dialysis was for a long time a dreaded word in her vocabulary but it is something she is slowly accepting. “I was very anti-dialysis to the point that I’d punch you if you said it to me, I will need dialysis but renal medicine has progressed a lot more, ten or sixteen years ago when I got first diagnosed first you couldn’t do home dialysis. Ten years ago I got assessed for a kidney transplant and they were like ‘there isn’t a hope we’re giving her a kidney because it won’t survive five seconds’ but now I’m getting reassessed again because it has moved on, surgeons are a lot more skilled, it has progressed. Dialysis is scary, I don’t want to go on it but I have a niece now and there is a lot in my life that I want to stay around for, I’ve matured now and know I will need it”.
A past pupil of Connolly NS and Ennis Community College, she described her secondary school days as “the best five years ever. Nowadays everyone wants to grow up so fast but those are the best years of your life”. While completing a PLC, she did work experience at Clare County Council and has been working with the local authority for the past eighteen years, sixteen of which have been in planning and the last two in rural development.
Although she admitted to feeling as if she is on borrowed time, Siobhán touches on this in the book. “We all have aches and pains, I’m 36 even though I only look 12 but I feel every bit of 36 I won’t lie, getting up in the morning does become that bit difficult. We speak about the ageing process in the book, I know it’s morbid to say but I believe I am on borrowed time, it is a miracle that I’m here, I was told I wouldn’t make it to 18, when I made it to 18 I was told there wasn’t a hope I’d make 21, I made 21 and the view was if I made 30 I’d be in the Guinness Book of Records and now I’m 36, it’s a case that I’ve beaten all the odds so I feel like I’m on borrowed time but I don’t think about it everyday, I live everyday as if it is my last, enjoy every bit of life that you can get”.
“It was said like ‘oh she’s still here, is she still coming to see us’. When I’d go to the doctor or hospital, they’d read my notes and say ‘I’m not going down to that one, she has one leg in the grave’ but the nurse would tell them ‘trust me she can rant off her medical history like I’ve not seen anyone to do it’, the morale to the story is don’t judge the book by its cover, I’m going along as best as I can but so is everybody. To say I’d only reach 18 was an assumption, not a fact,” she added.
Putting the odds in her favour has seen Siobhán adapt a seize the day type of mindset. The TEDX Talk is one item from the bucket list to tick off but she’s been busy with the pen crossing off other targets including going on a motorbike ride for the first time in Lahinch and Inagh last week. “I was begging the driver ‘please don’t go on the main road’, then we went on the main road I held on for dear life like I never did before but it was great craic. According to him we were going very slow but coming out of the driveway I said will you slow down really aggressively and he told me we were only going at three miles, we were fine once we got out on the main road, it was just a case of letting go, with my medical problems I have a sense of control which is very hard to let go of but having to trust him on the motorbike was training for me”.
Tattooed onto her left hand is the signatures of her parents, getting inked up is another item ticked off the list. “You’re not the first to say they are scribbles. Another mad notion! It is from the bucket list again. I’ve my parents signatures, Noel and Geraldine, I’ve always wanted to get it, even though I always wanted to get one you would swear I was getting murdered the day I went it to do it, I was very dramatic”.
Further public appearances in the speaking world is the next ambition for the author. “The opportunity I’ve been given is huge but it is terrifying and exciting, I hope it does open opportunities like that, I got the opportunity to speak to a lot of student doctors after the first book, that is one of the things I really want to get back into because you can learn an awful lot from a textbook and I am a science girl but human experience is golden, I want to support and help doctors with bedside manner, that is not something to learn off a book, it is instilled in you”.
Engagement with the public is also more common off the back of the recent release which was launched in the headquarters of Clare County Council. “I have people walking up to me on the street as if they know me and I feel really bad if I don’t recognise them because I like to call people by name. People have been very kind, they are getting more of an insight on what it is like to live with these conditions, I can give you a real raw insight with this book, I speak of the difficult days. Every child is a gift no matter what but there’s not many parents out there who will say ‘I have a child with a disability and it is rough, I’ve been given an awful challenge’, it is okay to admit that, parents are afraid to say that nowadays, it is okay to say it is difficult”.
