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!
The Eighth Amendment affects people who have the ability to become pregnant In Ireland.
The Eighth Amendment states that the foetus has the same rights as the person who is pregnant. Ireland and Malta are the last two European countries where abortion hasn’t been made legal. The Eighth Amendment was added to the Irish Constitution in 1983. It means that abortion services are unavailable in Ireland. Even in the case of fatal foetal abnormalities or when a woman becomes pregnant as a result of rape. Approximately 12 Irish people per day are forced to travel to the UK to have an abortion.
Last week we discussed how the Eighth Amendment affected women during pregnancy and birth. This week we are going to explore how the Eighth affects people who are sick and have the ability to become pregnant.
Fellow blogger, Cripple, Baby! has kindly allowed me to share her story. Catherine like me, has Ehlers Danlos Syndrome.
How the Eighth Amendment could have affected Catherine with Cancer:
For me, the Eighth Amendment brings to mind of when I was diagnosed with cancer, back in 2013.
No I was not pregnant, no I was not planning to become pregnant, and no I was not planning on having an abortion. Yet the tone was set for many a discussion around such subjects, the very minute I was diagnosed.
One might assume this conversation would take the form of discussing options for egg preservation, in case of future fertility problems. Although this was never mentioned really, only glossed over. A simple “I’m sure you’ll be ok” was all that was given in this respect.
My period was a good sign
Something I realised was vastly different from the experiences of UK cancer patients, through discussions on support forums. I can only assume such options aren’t granted free by the HSE, and perhaps some doctors just see it all as a bit “icky”? I really have no idea. In fairness, I never pushed the issue. The only guidance I was given with that side of things was the nurse whispering to me during chemotherapy inquiring about my periods, stating that a regular flow was a good sign at least.
No, this was not the route of the pregnancy conversation. The one and only topic was around what would happen if I became pregnant during my treatment. [pullquote]Of course I was advised to use all the contraception possible, to not purposely become pregnant during this time obviously, that would be insane. But as we all know, even with all the contraption in the world shit happens.[/pullquote]
In this scenario the woman has two choices (in other countries) continue the pregnancy, reduce your treatment (or not, but it would be advised) or plan a termination, in order to give yourself the best chance of survival. Neither option is easy. Yet women make these choices for themselves, all around the world, every single day. And we trust they know what is best for them. Neither case in this regard deserves judgement, they are and should be, case-by-case decisions made by the women themselves and fully supported by both medical staff and loved ones.
The hypothetical foetus
So when I was diagnosed with Hodgkin’s lymphoma in 2013, I was quickly informed of what would happen if I became pregnant. They would reduce the treatment in order to give the foetus the best chance of survival. At first this seems like just good advice, a reassurance that if needs be they will do what they can to help me. I am a young woman of child-bearing age, so it’s all relevant. But this mantra was repeated again and again during my treatment, by various medical care professionals. Many a conversation about saving the life of my hypothetical foetus. To get the point across that in this scenario, in this country, I would have no choice.
It’s something I’ve looked back on often. Sometimes with amusement, but mostly with dismay. It just makes me feel very uneasy. My life is more important than a hypothetical, or real, foetus. The life of a fully grown adult is not equal to that of a zygote. Before we even bring choice into it, that’s simply the case.
As heartbreaking as that can seem in situations where a pregnancy is not viable, or comes with a hefty price. This statement excludes cases of late-term “abortions” due to fatal fetal abnormalities, as we all know that late-term “abortions” are simply not done for the craic (in any country) and any further explanation on that would frankly be stupid and I hope unnecessary. When a matured, wanted foetus is dying in its mother’s womb, it’s horrendous for the parents. It’s not something to be mocked, or mislabeled. And it certainly isn’t something Irish parents should have to deal with, alone, in a different country. A financial burden on top of saying goodbye to their child in peace.
Shit happens
Luckily I finished my treatments without any accidents. But shit does happen. It happens to Irish women each and every day. So I have to put myself in their shoes. What would I have done? Could I have been able to access medical support after coming home from England? Would I financially be able to even afford a termination? Is it possible that I would I be held by the state if I informed my doctors of my wishes? Would I even feel comfortable telling loved ones? Looking at such a broad issue, simply in my own terms, my own real experiences, just does not cut it. And it shouldn’t cut it for anyone.
To truly look at this Eighth amendment and the restrictions it poses on Irish women rationally, we must not only look at it from how our own lives have gone to date. We must ask ourselves, “what if…?”. This is only one, small scenario that I can place myself in, even though it did not happen to me. Even though (under normal circumstances) I really don’t think I would ever choose an abortion in my life time. There are so many scenarios; so many stories that are not our own.
Abortion isn’t always an easy option but many have no regrets and know it’s the right choice for them; for all sorts of reasons that are none of our business. Many also have no choice.
No one can 100%, truly say “I will never terminate a pregnancy”, even when it seems completely unthinkable in our current lives shit happens.
How the Eighth Amendment could affect Laura with Psoriasis:
I have psoriasis. I’ve had it since I was nine, I’m 30 now. It had peaks and troughs but since being an adult it has more or less stayed the same. It’s not just flaky skin that’s itchy. It’s unsightly red blotches all over. The Psoriasis is on my face, breasts and bottom. No where is safe.
It has affected my self-esteem greatly and at times my physical health when it cracks and bleeds. When I was 15 it was so bad on my arms that I couldn’t raise them further than my chest and my mother had to dress me. That was pretty humiliating.
I’ve been called several names because of it ‘scabby’ being the most popular and nothing makes me retreat to being a child who wants their mother, than an adult who stares.
I’ve had several treatments and have tried many diets and none have worked for an extended period of time. The most relief I had with these treatments was three months.
Hope for relief
So, this year I was informed I was a suitable candidate for a series of injections. These are relatively new. The injections work by changing how your immune system produces skin cells. Psoriasis is an overproduction of skin cells.
One of the main side effects is that my immune system will be lower than the average person. I will be more likely to get a cold/flu and it viruses and illnesses will be harder to shift.
The biggest warning I got was not to get pregnant. I probably wouldn’t carry full term and if I did, we both would have lasting damage. I’m a married woman and perform my ‘wifely duties’ as a certain religious organisation calls it. We use two types of protection but nothing is 100% safe.
This is why the Eighth Amendment needs to be repealed. If I were to get pregnant it could be very detrimental to my health and the foetus. I also know, from having relatives with these conditions, that I couldn’t care for a special needs baby, while ill myself. It would be a likely scenario if I were to have a baby.
Potential pregnancy
My injections are life long, so I can’t get pregnant at all. My health is more important than a foetus. I have a husband and family and friends.
If I were to get pregnant, I would be devastated, particularly as I use two methods of contraception. I would have to arrange an abortion and that would be very upsetting. [pullquote]Nobody likes having to get an abortion but I firmly believe my health and well-being are more important.[/pullquote]
I also suffer with my mental health and to be honest, I’d be afraid that pregnancy would make it worse, due to the impact it would have on my life. My physical and mental health would be put on a back burner if I were to get pregnant under the Eighth Amendment.
I know I would be pressured to put the foetus’ health and needs before my own, even before it’s born. Sometimes I struggle to care for myself, never mind a helpless baby.
People have asked me if I can come off my medication to have children. The truth is, I don’t want to. It may be selfish but I want a quality of life for myself and not having children is a side effect of that. I did initially grieve before starting treatment but now I am fine with that decision. A door has closed but a new one has opened and so far, I haven’t looked back.
[bctt tweet=”No woman has an abortion for fun. —Elizabeth Joan Smith” username=”@thezebramom”]
How the Eighth Amendment could affect me:
During my last pregnancy, I was in a wheelchair from the first trimester until my daughter was three-month old. Having EDS, there are some risks involved in pregnancy. You are at risk of pre term labour, miscarriage and of hemorrhaging, to name but a few issues. I lost my son’s twin at about seven weeks into my first pregnancy.
Almost immediately into my second pregnancy my pelvis became an issue. Symphysis Pubis Dysfunction (SPD) is a pretty common condition during pregnancy; but not early on in pregnancy. Most women complain of the pain in their groin, back, legs and hips in their last trimester and usually manage with crutches.
The foetus growing inside me was just two inches when my body turned against me. The pain was unreal. I have put up with dislocated joints-even popping them back in myself but this was something else. I could not physically walk without crying. Some days I did try not to use it in order to stay mobile and avoid muscle wastage but even then I had to use special crutches. For days after I attempted walking I would be stuck in bed screaming in pain. Before pregnancy, I was on opiates and they barely took the edge of my chronic pain.
My waters broke weeks before I was due to give birth. I went into the maternity hospital and told them I felt a pop and a trickle. So they examined me and came to the conclusion that my waters hadn’t broken. I went for an appointment in the high risk clinic a couple of weeks later and mentioned baby had been a bit quiet. So they scanned me and lo and behold, half of my waters were gone. So I was induced that night.
Traumatic birth
I was put on IV antibiotics to prevent infection. We were both pretty lucky we hadn’t picked up an infection with my waters leaking.
Several hours later I gave birth but then I started to feel very unwell. I was vomiting and passing out. I was having a massive bleed and the midwives were calling for blood. Luckily, they stopped the bleeding on time and I lost half my blood volume. It took a year and high doses of iron for me to feel “normal” again. The whole experience traumatised me.
Three months and a lot of hard work and I got myself out of the wheelchair for the most part. I still have to use it if I am out of the house for an extended period of time. My pelvis is almost always dislocated and affects my back and legs as well.
Pregnancy could leave me permanently immobile
Progesterone plays a massive role with my condition as it causes my joints to become even more lax. If I were to get pregnant again, it is very, very likely that I will not be so lucky (not so much luck as I put in a tonne of work) to get out of the wheelchair. I have been warned not to get pregnant again. The contraception I am on at the moment but it will have to come out as it is affecting my health. I can not have any “unnecessary” surgery like a tube ligation or hysterectomy. A C Section can not be performed without it being an emergency because I am susceptible to infection, stitches don’t hold well and I would suffer with chronic regional pain on top of the wide-spread chronic pain I suffer with now.
I have two children. I have a husband who is my carer. He does almost all the cooking and the cleaning while looking after our two children and a budding business. There are days where he must help me get out of the shower and even dress me.
If I were to have another baby, I would never have a “good day”. I would be in even more pain than I am in now. An American doctor who used to be an Oncologist has stated that EDS would be one of the top three most painful conditions to live with.
Abortion would be the best decision for our family
[pullquote]I can not put myself in more pain. It is not possible to put my family through more than what they already experience. I have to be a mother to the children I have now[/pullquote]. Ehlers Danlos Syndrome is an inherited condition. My children have a 50/50 chance of having this condition. Both our son and daughter have EDS. Our two-year old daughter is more affected than my son-suffering three dislocations already. I can’t subject another child to this life of pain. I will not. Accidents happen and if I were to get pregnant accidentally, I would have to have an abortion no ifs or buts.
Travelling for any amount of time leaves me bed/couch bound for days. Stress causes my symptoms to flare. If I should need to have an abortion, I should be able to go to my local hospital, have the procedure and go home that night to my own bed, to be surrounded by my family. I should be able to be open about what had just happened and not hide it in shame. I would be making the right decision for my family. The family that is living and breathing.
Up until pretty recently, I was anti choice. It was when I had to travel to the UK for treatment not available in Ireland that my mind was truly changed. I empathised with all the Irish women who had to travel. I cried at the thought of these women being alone because their partners couldn’t get the day off work or because they were raped and didn’t want to tell anyone.
The Eighth Amendment needs to go.
I’m fighting for repeal of the Eighth Amendment not just for me, but for my daughter. EDS gets worse when a girl hits puberty and most of the time, during pregnancy. If she’s already this affected now, it does not bear thinking of how the condition will manifest later on in life. She needs to have bodily autonomy. This condition takes away so many freedoms over our bodies, we do not need anything else taken away from us.
I have started a Facebook page, Disabled People for Choice in Ireland to show the world that despite what the anti-choice might think, there are those with disabilities who believe in choice, no matter the situation.
[bctt tweet=”You cannot have maternal health without reproductive health. And reproductive health includes contraception and family planning and access to legal, safe abortion. —Hillary Clinton” username=”@thezebramom”]
Some facts from the Abortion Rights Campaign in Ireland:
The Eighth Amendment equates the life of a woman to that of an embryo.
The vast majority of women who want and need abortions are unable to access them in Ireland under interpretations of this law.
Women have already died in Ireland having been denied life-saving abortion procedures.
At least 150,000 women have travelled to other countries to procure abortions since 1980.
Thousands of women are unable to travel for abortion services due to family, legal status, financial situation, or health.
People who procure abortion within the country risk a 14 year jail term. Doctors can be jailed too.
The majority of people in Ireland support much wider access to abortion than is permitted under the 8th Amendment.
The life and health of a pregnant woman has a much greater value than our constitution places on it.
Thank You to Laura and Catherine for sharing their stories with me.
If you would like to tell your story, email hello@thezebramom.com
One mother's experience of life with Ehlers Danlos Syndrome
The Zebra Mom 