In “Parent unfit”, a disabled mother shares parental lessons, for everyone: NPR

In 2011, Jessica Slice did an intense summer hike on the Greek island of Santorini. She did not drink enough water and when she returned to her cruising boat, she felt dizzy and nauseating.

She thought it would pass, but her symptoms got worse, which makes it difficult to stand up without going through. And they didn't go.

After years of testing, meetings of doctors, rehabilitation and frustration programs, Slice was finally diagnosed with postural orthostatic tachycardia syndrome, or pots, a disorder of the autonomic nervous system.

She ends up kissing a new identity: a disabled person. Becoming a disabled has radically changed her life, in a way that, according to her, is both difficult and stimulating.

Then she became a mom.

Slice's new book, Unfit parenting: a disabled mother challenges an inaccessible world,, Chronicle his experiences as a disabled parent, first as an adoptive parent, then as a biological parent via a gestational substitution maternity.

Like many parental memories, his book is full of layers of diapers, googler “how to take care of a newborn” and moments of tenderness. But his story is also defined by physical and emotional challenges that have forced her to embrace according to the others.

And this desire to ask for help, supports Slice, is something that all parents – disabled or not – can learn. Slice offers a perspective of the world of justice for disability, a movement that fights against “corrosive perfectionism” and rather pleads for mutual aid, the infrastructure that hosts all the stronger social security networks and networks.

“Every parent I know has the impression of being a logistics hiccup far from a breakdown,” she writes. “How did we get here? Why does parenting feel like an impossible feat that threatens to destroy a person who takes him?”

Slice spoke with NPR of his book. Their conversation has been modified for more clarity and length.

You argue that parenting consists in accepting a loss of control. As much as they wish, parents cannot make their children do what they want. How did become disabled helping you accept this?

I am, by nature and to feed and be an eldest girl, a very controlling person. I was in the extreme in her twenties. I had the feeling that my own efforts could make me happy if I only understood how to do things well enough: working hard and eating good things and planning the perfect week every week. I just thought that there was the perfection feasible and that I would find satisfaction. I never understood why I felt like I was collapsing inside. I had this kind of deep and deep dissatisfaction.

At 28, I became disabled. My beginning was so sudden and changed my life so deep during a day. It took years to accept that I was sick, that I was handicapped and that I would never be well. In this process, the feeling that a good life was in my own power had been removed from me.

So when I became a parent, after having become disabled, I no longer put pressure on myself as a parent to do everything correctly. I don't put pressure on my children either to do everything correctly. In many ways, my parenting is limited, because I can do much less physically than before. I mean, radically less. But there is something really fundamental: I agree with life that is not perfect or beautiful according to all my expectations, and I do not agree with my children either. Although, of course, my children are beautiful.

Our cultural ideas of perfection are often linked to capitalism, which gives us the idea that we should be productive and independent and not count on anyone else for all kinds of help. What are the examples of how this change of mentality appears in your parenting?

I am not followed [developmental] Milestones for my children. I don't even remember when my first child did anything. I hold it so vaguely that it does not stay in my brain. I believe that if my children need additional support, I will know it because I am an attentive and involved parent. I really don't care when they are supposed to do things. I am not always worried about when they crawl, when they will say a word or will put something in a bucket. When they do things, it's very funny and delicious. We have a baby now, and every new thing he does is a shock.

I do not think that the milestones written largely are a bad idea, but I think that in a certain highly competitive and perfectionist population – a largely higher income – milestones are this thing inducing anxiety.

Milestones are just an example. The release of control, or this feeling that there is a correctness that we must align as much as possible, gave me a feeling of freedom. I don't look at my children, waiting for them to be right or wrong.

Our safety net in the United States is so weak, it is scary that we might need to count on it. But parenthood is, by definition, to take care of a vulnerable person. Why is disability so stigmatized in our culture, when parenting is rented?

This is why parenting can be so shocking. It is this milestone greeted, but when it happens, it strikes something primary: it is not sure, it is not good, because there is this interdependence in parenting. When you become a parent, you enter a system where you need care. If you are the one who gave birth, certainly, but whatever happens, parents always need help. You cannot make each part by yourself, and you become dependent.

And so I think that part of the reason why parenthood can feel so difficult is because it is a relationship, even without knowing it, with disability. We are terrified by disability. Handicap is assimilated to mortality. And the last thing we want to think about with parenting is that we are fragile, that we are fatal.

Not disabled people have so much pressure to be invincible: you shouldn't need care, you shouldn't need it, shouldn't spoil it, it shouldn't be difficult. If we were not so afraid of disability, then we could fully admit each of our relationships with fragility. When you care about acceptance of limited capacity, it leaves us open to much more joy, but also so much honesty on the experiences that we really live.

You write in horrible ways that disabled people have been treated by the American health system: institutionalization, forced sterilization, denial of care. And personally, doctors act as guards around your “fitness” to become a parent. What would justice and equity look like for people with disabilities in borehole health care?

Justice for people with disabilities begins very young and spends all along. People with disabilities are often excluded or do not have access to inclusive sex education. And they undergo sexual assault at a frequency greater than unabled people. People with disabilities are much less likely to receive a pregnancy test than a non -disabled person. And many obstetricians and gynecologists have not accessible [clinics] and training to treat people with disabilities.

The majority of doctors would prefer not to work with disabled people, According to the search for Dr Lisa Iezzoni. We take so much time, energy and labor, and doctors operate in a system that does not allow that to be paid.

People with disabilities are often advisable not to happen again, for fear that we are producing another disabled child. Our second child was born by substitution maternity, and people said to me: “You are not assured that the baby does not have your handicap?” And I said to myself: “Well, I really like my life.” I do not think it should be the hypothesis, that we would not want another person with the life I live.

Obtaining a powerful wheelchair has transformed your life. How has parenting changed for you once you started using one?

I can endure about 30 seconds at one minute before becoming very symptomatic and starting to pass out. I can sit down, not supported, for three to five minutes. And during the first seven years, I was disabled, I really never considered an electric wheelchair. I just thought that the world at my disposal was the world I could access if I never had to endure more than 30 seconds.

Then, when my daughter was one and started to do more things from the house for which I could not reach her, like going to the playground and a ballet class, I was really not satisfied to miss them. And then I looked in an electric wheelchair.

It changed my life. I can go to places now. I can be in the world with my children, but also do my own business. I can make long walks. I can go to stores. I become again in the world. And now the thing that limits is: where can a wheelchair go and not go? I think people feel very sad for me when they see me in a wheelchair. But it's actually so happy for me than when I didn't.

Mara Gordon is a family doctor at the Cooper Medical School of Rowan University and contributor to NPR. She writes the Sub -Sack Newsletter “Main complaint. “”