Mother-of-two Evie Nevin has a rare, genetic connective tissue disorder called Ehlers-Danlos Syndrome, which can make pregnancy especially dangerous.
During Evie’s last pregnancy she was largely wheelchair-bound. As a result of her condition, Evie developed severe Symphysis Pubis Dysfunction.
This left her in considerable pain, as her pelvis was constantly dislocated. During labour, her pelvis became even more damaged and almost three years later, she is still living with the consequences of pregnancy and childbirth.
Evie runs a blog where she shares stories about living with a disability. Recently she shared her thoughts about disability and the forthcoming 8th amendment referendum.
“Pregnancy has risks, disability or not, but it can especially dangerous for me.
“I’m at risk of miscarriage, early labour, and I’m at risk of hemorrhaging. Many pregnant people with EDS end up with their condition progressing as a result of pregnancy.”
Evie says she feels the voices of people with disabilities who can become pregnant are missing from the Repeal debate. If Evie was to become pregnant and was unable to access or afford an abortion, she would be forced to continue a pregnancy that could leave her with permanent injuries or even lead to her death.
“I have two children to think about and my children need their mother. If I found out I was pregnant tomorrow? I would need to access an abortion, no question.”
During a recent live radio debate, anti-choice campaigner Tim Jackson told Evie that if she became pregnant again the doctors could induce her early.
“I said ‘it’s not just the birth that’s risky, but even just being pregnant. Pregnancy hormones don’t sit well with pregnant patients with EDS. We tend to experience more dislocations. There isn’t a day where I am not in pain’.”
Both of Evie’s children also have Ehlers-Danlos syndrome, a genetic connective tissue disorder that affects every system in the body. Evie says that services for people with disabilities are scarce and difficult to access. There are even less supports available for parents who have disabilities and who are trying to raise their children.
“There are very few supports available and the supports there are you have to fight hard to get. People are often refused disability and carer’s allowance first time around and then have to fight to get it.”
And there are other issues that affect people living with a disability and they can cause extra stresses when it comes to accessing reproductive healthcare: financial issues are just one barrier. A study released this week of 11 EU countries found that Ireland has the largest deprivation gap between people living with disabilities and able-bodied people.
“There could also be mobility issues that would cause them difficulty travelling. No one should have to leave the country to access healthcare.
“I do this on a regular basis to treat my condition so I empathise with the nine women who travel from Ireland every day.”
Evie says that the narrative that people with disabilities will be wiped out if the 8th amendment is repealed is highly offensive.
“It’s extremely condescending and patronising to assume that women will choose to abort when given the option. Repealing the 8th won’t mean everyone must have an abortion, it’s not like it’s going to be compulsory. Anti-choice people seem to think people will be forced or coerced to have one.”
“These ideas of people with disabilities being wiped out will not happen as the majority are not even diagnosed until after 12 weeks. A lot of people don’t choose to have any further screening for disabilities as well, so this whole angle the anti-choice crowd has just isn’t going to happen.”
And ultimately, Evie says the person who is pregnant should be trusted to make the right decision for them.
“The choice should be with the pregnant person. They should be supported, whatever they choose.”
