Somebody once told me I could run the world with my laptop and an internet connection.
Most people use the internet for mundane things like social media, checking out movie times, bus times, reading “list” articles etc. People often think they couldn’t live without the internet or rather, social media. We have forgotten what we did before the world-wide-web became a staple in people’s lives.
People with chronic illnesses and disabilities see the internet as more than just a way to settle a debate between friends about which actress played a part in some film or to keep up with the Kardashians on their Instagram stories.
[pullquote]The internet has allowed those of us who have been trapped in our homes by physical illness and also for those of us with crippling social anxiety to remain a part of society. We can get involved, we can change the world with just a few clicks on the computer.[/pullquote]
This is where my path to activism started. The internet allowed me to learn from people across the world on how to change things for the better, it allowed me to get involved in social justice issues. I learned that I was far from alone in the way I lived. Trapped at home most of the time because of my illness. I am not reliable enough for a full-time job and set hours. If I could work from home, at my own pace without set hours, I’d be sorted. Those jobs are far and few between.
So, with no job, the inability to leave the house whenever I liked, the internet became my home and allowed me to fill my time and feel useful.
It’s been so long since I wrote my blog on why I am pro-choice. So there is a lot to fill you in on. I’ll try to be as brief as possible!
Repeal
So with a date announced to hold a referendum on whether Ireland should repeal the Eighth Amendment, I set up Disabled People Together for Yes. We called to remove the archaic law that prevented abortion except in cases where the pregnant person’s life is under ‘a real and substantial risk.’ It meant that you couldn’t have an abortion unless you were on death’s door. Even if you were a victim of rape, incest or the foetus had a fatal abnormality.
I traveled all over Ireland attending public meetings spreading the message of how people with disabilities were disproportionately affected by the Eighth Amendment. I explained my own story of pregnancy with Ollie Pop and what would happen should my contraception fail.
Strike 4 Repeal protest Credit Siobhan Venables
I am very proud to say I was actively changing people’s minds. Total strangers approached me to tell me that they hadn’t considered how people with disabilities would be affected by the lack of abortion services. It made the complete exhaustion, excruciating pain and time away from my family totally worth it.
Right before referendum day, I flew to Manchester for REDS4VEDS day. That was the first time I had ever taken a plane alone in my 31 years and something I thought I’d never be able to do. Taking multiple buses and trains alone around Ireland prepared me for the journey.
The beauty of the internet was that in the eight months I was campaigning, I never took a day off and yet, I was making a difference. I scheduled my speeches carefully so that I wouldn’t spend any more than two days of the week traveling. When I got home, I crashed, in pain and emotionally drained. But, I still opened up the laptop to create content, share stories that were sent to me and arrange the next public outing.
My first speech was at the International Women’s Day March in Cork city.
I went on a few TV shows discussing the referendum, and um…let’s just say my face went a tad viral on Twitter:
The Zebra Mom at the Pat Kenny Show
I did so many things in between like writing and filming my poem “Bring Compassion Home”. Looking back on it now, I was actually so busy. I don’t know how I did it. Compassion and fighting for something you genuinely care about really can give you energy and drive that you never knew you had.
Voting Day was May 25 and that night the exit polls showed we won by a landslide. On May 26, it was confirmed. Ireland voted yes to the 36th Amendment to the constitution. The 8th was gone and nobody would have to travel for abortion anymore. In reality, that wasn’t the case, of course, there were those who were not happy with the result and went to the High Courts to contest the result. Purely a delay tactic, in my opinion. Until these court cases are put to bed, our President can not sign off on removing our 8th Amendment.
The Government has now told us it will be January before legislation will be enacted. [pullquote]That means over 2,000 women will still have to travel or order pills online and take their lives into their hands.[/pullquote]
We had hoped that we would never have to march for this cause again but unfortunately, we will be marching on September 29th. I am delighted to say that I have been invited on to the stage to speak. Last year there were 30,000 people marching so it is nerve-wracking but I am also super excited for it all!
So, what else have I been up to?
Well, I spoke at Galway University at their disability law summer school which I was really nervous doing (and it was super obvious) but after a few minutes, I managed OK.
Now? I am actually running in next year’s local election for a seat on the county council!
Social Democrats Candidate, Evie Nevin.
There is nobody in our Government that truly represents people with disabilities.[pullquote] We don’t have many women in Government nevermind any women with disabilities![/pullquote]
I’ve also started taking driving lessons with a great instructor who specialises in helping people with disabilities. This is a huge deal for me because I had a real fear of getting back on the road. But, I’ve taken the same approach with everything else this year and just, well, did it. I was most nervous about city driving so I started my lessons in the city. Go big or go home and all that jazz.
So it’s been a really hectic year so far and it all started with a new year’s resolution to not say no to opportunities because it was scary. Scary or not, it has been one of the best years of my life. I got to visit new places and meet the most amazing people including one of my favourite authors, Louise O’Neill.
The Zebra Mom with author, Louise O’Neill.
I was offered so many additional opportunities. I know if I had said no to that initial speech on International Women’s Day, I wouldn’t be in the position I am in today. There have been so many things before that I had the opportunity to do but fear stood in the way.
In addition to my own political campaign, I am now getting involved in helping the people of Northern Ireland get the same reproductive rights as we achieved. There is so much more I want to achieve and get involved in!
So moral of the story is that we can change the world within the confines of our homes and that when you say yes to things (despite it being really scary), wonderful, wonderful things can happen. There is nothing worse than wishing you had taken the chance on yourself. You just never know where it can lead you and what doors can open as a result.
What is your passion? Is there a cause you feel very strongly about? Let me know in the comments below!
In Ireland, the debate around the Eighth Amendment is well underway. With a date for the Referendum to be confirmed, it is expected to take place May or June of 2018. This week we explore the issues around the Eighth Amendment and why people with a disability in Ireland need access to free, safe and legal abortion.
Tactics are getting dirty, with “pro-life” groups buying domains that appear to be websites about repealing the Eighth. In actual fact, the sites direct people to a pro-life site. News sources reveal that Ireland’s main anti-abortion group has hired a company that has worked with Donald Trump and the US pro-gun lobby to help implement its referendum strategy.
The Irish Times also revealed that an anti-abortion group has hired a political consultancy which has been linked to controversial aspects of the Brexit Leave campaign. The Pro-Life Campaign has, of course, refused to confirm if it has hired Kanto.
“Pro-Life has now hired uCampaign to set up its “Love Both” app. UCampaign was founded by Thomas Peters, a conservative Catholic US blogger. He has created apps to promote the president’s “America First” strategy as well as for the unsuccessful campaign against same-sex marriage in Australia, the UK Conservative Party, the Vote Leave Brexit campaign, the US National Rifle Association, for Ted Cruz and Rand Paul, the Republican politicians, and for American anti-abortion groups.”-The Sunday Times
We all know how nasty things got during those events last year so it is making me anxious about what is to come over the next four-five months.
People with disabilities should not be used for emotional blackmail
One argument that is being constantly used is that disabled people will be wiped out from existence should the Eighth be repealed and legislation brought in to decriminalise abortion.
Recently, I had the displeasure of arguing with a man who had this notion. His proof of this happening? A video of an American man with Down Syndrome. In this video, the man says that he lives an amazing life, given amazing opportunities and that those with Down Syndrome shouldn’t be looked down upon. The ironic thing is that this video was used to prove people with Down Syndrome are being wiped out. Yet, in America where abortion is legal, 6,000 babies with Down Syndrome are born each year (CDC statistic). Two babies are born with the condition each day in the UK. It is downright patronising and condescending to assume a person would have aborted their disabled child if they had access to abortion. Even in countries where abortion is liberally legal, the rates of abortion as a whole are very low. Most disabilities are not diagnosed until about 20 weeks into a pregnancy. Should the legislation follow the Citizen’s Assembly recommendations, no foetus with a non-life-threatening (known) disability will be aborted legally. The foetus would have to be diagnosed with a fatal abnormality to allow for later term abortions (after 12 weeks).
Iceland
People often refer to Iceland being Down Syndrome free. Here’s what Hulda Hjartardóttir, chief of obstetrics at Iceland’s National University Hospital had to say on the matter:
“The truth is that one-third of mothers-to-be choose not to have more [pre-natal] tests done after the first indication of Down Syndrome. These women want to continue their pregnancies even with the increased chance of Down [Syndrome]. [Also], 80 to 85 percent of [pregnant] women choose to have the screening, so there are 15 to 20 percent who don’t. Those women don’t want the information. Of the women who have the screening and get results that point to increased risk [of Down Syndrome] about 75 to 80 percent get further tests done but 20 to 25 percent choose not to.”
Dr. Hjartardóttir also said that in cases of prenatal Down Syndrome diagnosis women and parents are offered the opportunity to meet with doctors and nurses who work with people with Down Syndrome. Parents are also offered the opportunity to meet the parents of those who have Down Syndrome.
I have really no idea why the pro-life debaters insist on using people with Down Syndrome to further their agenda. I don’t know why anyone would use people with any disability for this debate in this manner. Perhaps it’s because we are seen as needing to be protected. But, we don’t. We want to be treated like everyone else and we want equal rights. We are not pawns in anyone’s game.
Earlier this week, CEO of Down Syndrome Ireland, Gary Owens responded to the use of Down Syndrome in the pro-life literature. He respectfully asked that people with Down Syndrome not be used as political footballs in the run-up to the Referendum. He stated that it was disrespectful to those living and caring for those with Down Syndrome, or any disability for that matter.
And yet, just yesterday, this was posted on Twitter:
Most people with disabilities are normal people who live fairly normal lives. They have children, jobs, they’re married and yes, they even have….*whispers* sex! I know, right?!
The point is that people with disabilities need reproductive rights too. We need to be allowed have a say over what happens to our bodies in pregnancy and during birth. We need access to free, safe and legal abortion.
As someone who regularly leaves their country for access to medical treatment, I can empathise with the nine women who leave Ireland daily to access abortion. I too have to scramble to find thousands to fund the trip. I too often feel isolated and let down by my Government who deny me and my children basic health care.
Travelling abroad for an abortion
Travelling for tests is exhausting, causes a flare up of all my symptoms and leaves me in bed for days and days. Sometimes my condition progresses after travel and stress. I couldn’t imagine how bad off I’d be if I’d have to travel for a procedure, have to travel back the same day and recover from something like an abortion. I wouldn’t be out of bed for weeks. My children wouldn’t have their mother to play with, to feed from. With the risk of complications and even death in any surgery, I may have, having to leave before I had time to recover some bit for the flight home could leave my kids motherless. Like all the rest of my medical care, abortion needs to be accessible in my own country.
If a person with a disability has mobility issues they may need to put things in place to help them get to and from the airport, to the hotel and clinic. This takes away their privacy in order to access an abortion abroad (which is a constitutional right).
Financing an abortion
I haven’t been able to work outside of the home in six years. My income is no more than a couple of hundred Euro a week on Disability Allowance. My husband is on Carer’s Allowance. Between the two of us, gathering enough money to travel to the UK, book a hotel and the abortion would be impossible. Sure, we have friends and family who could help us out but, not everybody does. Not everyone has a partner to help through the process of abortion. Not everybody has a support system going through an abortion.
Pregnancy is a risk to health
I take precautions in preventing pregnancy but, nothing is 100% safe. Sometimes one of those suckers gets through and throws a spanner into the works. If I found out I was pregnant tomorrow, I would have to access abortion, no question.
During my second pregnancy back in 2014, I was wheelchair bound thanks to severe Symphysis Pubis Dysfunction caused by my Ehlers Danlos Syndrome. I was in constant pain with my dislocated pelvis. You’d think I’d have been used to the pain since my joints dislocate on a regular basis but ask any woman who has suffered from the condition and they’d tell you it’s like being kicked in the vagina with every step you take. By five weeks I was in the wheelchair and often forced myself to use my special crutches so my muscles wouldn’t waste away.
Then there was the horrific ordeal of hemorrhaging. I lost just under half of my blood volume., in and out of consciousness and when I was awake, I was vomiting. My baby could not be in my arms for the first couple of hours of her life as I was so out of it. People with EDS are at risk of this, I knew that at the time but my first pregnancy was so uneventful, I (naively) figured I’d be alright.
They were calling for blood but luckily, they stopped the bleeding just in time. We can not risk that happening again. I can not risk my life and leave the two children I have without a mother.
I worked very hard to get out of my wheelchair. Even though my determination was strong, I still have to use it if I will be out of the house for an extended period of time. If I were to get pregnant again (never mind the birth bit) I won’t get out of the chair again.
A pro-lifer once told me if I were to get pregnant that I could simply “get induced early”. The problem with that scenario is that pregnancy is what disables me. Remember; five weeks into my pregnancy I was in a wheelchair. I wouldn’t make it to 24 weeks.
It is down to each person to assess the risk of being pregnant. I knew the risks of pregnancy with EDS and decided to go ahead in my second pregnancy. But, if I knew then, what I know now, I don’t know if I would have gone ahead with either of my pregnancies. I love my children to death and they make life with disability worth living but I have been left more disabled and mentally scarred from my experiences during pregnancy and birth.
Continuity of care
There is none, simply. There is no contact between a patient’s medical team in Ireland and the team carrying out the abortion in the UK. Which means the gynaecologist/OBGYN may not have all the information they need to properly care for their patient. Since there are thousands of disabilities and even more symptoms and complications that can arise, it would be hard to know of what to be cautious of. Medical history is very important, especially when it comes to surgery. For example, people with Ehlers Danlos Syndrome metabolise drugs differently to the average person.
The issues go on and complications are not exclusive to Ehlers Danlos Syndrome. So, by the time a person has gathered the funds and have organised a trip out of the country to procure an abortion, they may have passed the point where they can have an abortion through the use of the pill, mifepristone. They will then instead have to undergo a surgical abortion.
Without a knowledge and background from a patient’s multidisciplinary team, things can get dangerous. However, should abortion be allowed in Ireland, teams could communicate (not that Irish doctors know a great deal about my condition) and put safeguards into place to prevent any risks to my health and life.
Sadly, there is also no continuity of care when a person travels for an abortion due to a Fatal Foetal Abnormality.
Credit: Disabled People for Choice
Sterilisation and celibacy
In the comment sections of online media outlets, you can be guaranteed to find at least one comment telling women to “just keep their legs closed” or to “get their tubes tied”. If it were only that easy! Women and trans men frequently ask to have their tubes tied or to have the whole lot removed. But, again, we can’t be trusted with our own bodies. It is incredibly difficult to get a tubal ligation in this country under a certain age or before you have a certain amount of children. Women with no children and who have no desire to be parents are often told “You just haven’t met the right man, yet” or “what if it doesn’t work out with your husband and you want to have children with someone else?” Do people honestly think we haven’t thought of all these scenarios before making such a big decision?
According to ongoing research conducted by Deirdre Duffy (Manchester Metropolitan University) and Mairéad Enright (Birmingham Law School), the main reason women are denied tubal ligation in Ireland is because of doctor’s own moral or religious beliefs.
Again, using myself as an example, my medical team will not allow me to have any unnecessary surgeries, only if it’s an emergency. This is because of my fragile connective tissue, one nick with a 10 blade (scalpel), in the wrong place and I could bleed out. The risk just isn’t worth it.
As for the whole “keep your legs closed” spiel, it’s such an unrealistic and ridiculous argument. You are against the idea of abortion and yet, your solution is to just have no pregnancies at all? No children to ever be born? Let’s face it, humans need sex. We are social creatures that need affection. We have needs and there is no shame in admitting we are sexual beings-even people with a disability!
I think the Catholic idea of people (and I mean women) who have sex just for fun is sinful is still very much apparent in Irish society. A woman could have a one night stand, take all the precautions in the world and end up pregnant. That’s not allowed though. She would be accused of using abortion as a form of contraception by those who are ignorant of how contraception actually works. Let’s face it, she would be branded a slut by many in society. Yet, over half of the people who travel for abortion are already parents. No name calling for them (well, except murderer by pro-lifers). From what I gather, the pro-life side doesn’t have an issue with exporting abortion to the UK. Otherwise, they’d be asking to repeal the 13th amendment that gives us the right to travel. Many don’t even have an issue with abortion in cases of rape incest or FFA. So, it seems people have an issue with how the foetus was conceived.
Genetics
It’s not a very common story, but one that isn’t unheard of where two people meet, they fall in love and get pregnant. Ten or so months later, they welcome their very wanted child to the world only to discover the baby has Cystic Fibrosis. Yes, the disease is incredibly rare but Ireland has the highest rate of it in the world. Newborn bloodspot screening for Cystic Fibrosis commenced in Ireland on 1st July 2011. All newborn children in Ireland are now tested for CF as part of the existing newborn bloodspot programme. Newborn blood spot screening is usually known as the ‘heel-prick test’. The test only covers the most common forms of CF.
Which means anybody over the age of seven (who don’t know of a family history of CF) won’t know if they carry the CF gene. Before 2011 any couple who didn’t know they had the gene for CF found out tragically when their child was diagnosed with the condition. Many couples were petrified of getting pregnant again and the 25% chance subsequent children would inherit the condition.
Many people who have genetic conditions choose not to have children or go ahead with a pregnancy and some do. Whether someone takes the gamble like we did or decides to not go ahead with a pregnancy, they should be supported in whatever decision they do make. You don’t have to agree with someone to support them. You accept their choices as they do not affect your life. That is the true meaning of “love both”.
Future generations
I have an almost three-year-old daughter. She inherited EDS from me. By age two she has suffered four dislocations. When puberty begins, her condition will worsen. Like me, she’ll be high risk if she was to ever get pregnant. At such a young age she is already showing signs that her condition will be worse than what I have experienced. I worry what a pregnancy would do to her. Whatever she decides, I will support but I want her to at least have a choice. I want her to be able to make a decision, I want her to be able to talk about her decision should she choose abortion. I don’t want her to feel ashamed and to feel as though she is doing something wrong. Nobody has an abortion on a whim or without thought. Nobody puts themselves through something like that for a laugh.
“You wouldn’t be here if it hadn’t been for the Eighth Amendment”
I am adopted. Thanks to good old Catholic Ireland, I was removed from my birth mother who was young and vulnerable. Yes, I was placed with a good family and had a pretty good childhood but, the adoption scarred me. I honestly don’t think I would have been aborted if my parents had been given the option. I was wanted but society wouldn’t allow it. If my parents had taken the boat to England? I wouldn’t be here and I would be none the wiser. Why? Because I would have been a foetus.
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One mother's experience of life with Ehlers Danlos Syndrome
The Zebra Mom 