Making the Decision to Parent with a Disability: Discussion & Personal Reflections From Disabled Women

Last Tuesday, I came across an article posted on the TIME’s website about a woman who decided to become a parent with a disability.  The writer of the piece has the same disability as I, Osteogenesis Imperfecta (OI), and she passed OI onto her daughter.  The article shared the struggles the mother had in watching her daughter live with OI, and the strong tinges of regret she held dear to her heart for bestowing this condition and disabled life onto her daughter.  Her candor was striking to me, and I shared the following reaction with my friends on Facebook:

I’m conflicted about this article, especially since the writer has OI. Though one of the reasons why I’ve always been hesitant about having children is because I know there’s a 50/50 chance of passing OI along to my offspring, that doesn’t fully deter me from having children. If my children ends up having OI, then that’s what God would want. If they’re “healthy,” then that’s God’s plans, too. I know that with some types of OI, the health complications can be severe, but with my type, I don’t have so many health problems.

I know that everyone is different, but I really did not like the overall tone of the article. There are many folks of various disabilities who “pass” their genes onto their offspring, & they help their children “cope” with being disabled.

My Perspective About Becoming a Disabled Mom:  

As the quoted text highlights, I, too, have some reservations about having children as a disabled woman, just as the author of the article does.  Am I worried that my children will resent me for passing OI to them?  Yes.  Am I concerned about my physical ability to properly care for my children?  Yes, especially since disabled parents are grossly and unfairly discriminated against by helping professionals who erroneously believe that having a disability “prevents’ one from being an effective, loving, caring, and stable parent.  Do I wonder about my children, regardless of their disability status, being proud or ashamed of having a disabled mom?  That does cross my mind, particularly when I think about trying to make their school and extracurricular activities.

All of these fears, whether sound or not, are experienced by many who contemplate or make the decision to become a disabled parent.  At 29 years old, I know what routes to becoming a parent I will take – in vitro fertilization (IVF) and surrogacy.  These two methods are ideal for me because of my shorter frame (under 4 feet tall), and the fact that if I was to become pregnant, the pregnancy would be considered high risk and there is a great chance of complications.  Being that I love the level of independence and quality of life I have, I do not want my health to be negatively affected in a way that would not only impact my ability to function, but also affect my ability to parent and care for my child.  Making childbearing and parenting decisions as a disabled woman is hard, full of uncertainties, “what ifs,” and wondering if your children will love their disabled selves if they inherit your disability.

Reflections about the Article from the Disabled Women Friends:

When I shared the article on Facebook, I asked my disabled women friends to share their comments.  Here are just a few of the responses:

Kathy*:  I can say Vilissa, I was born with SB [Spinal Bifida]. Doctors said I couldn’t have children, so when I found out I was pregnant, yes I was happy but scared at the same time.  God saw fit that my daughter and I were doing ok. She came out healthy.  We were very blessed.

Sara*:  Vilissa, the article does make some good points on both sides. Since you asked for my thoughts, I have to preface them with the disclosure that I am childless by choice, so I don’t really know what it’s like to have parental feelings of this nature. Virtually all parents feel it’s their duty to always protect their child, even in situations where there is nothing they could have done to protect them, so I would imagine this author’s feelings are probably an extension of those protective instincts. However, in my case, my choice to be childless did not come from any fear of passing OI onto a child but was based instead on two factors. One of which was the fact that my mother had OI and I saw first hand the lasting effects that carrying a child had on her body. Her entire midsection was never the same; she suffered countless digestive, bladder and bowel problems for the rest of her life, all because she carried a child for 8 months inside her small body, where all of her internal organs were smushed. The other reason I chose to not have kids was that as a (recently retired) teacher who was around kids all day, I really preferred not having them in my home (LOL). I have always been grateful to have had a mother who had OI (and who was also educated and very successful), as I had a role model for success that many disabled children do not have. If I had chosen to have kids, I would have adopted an OI child. Okay, I’m rambling, I think, but I guess my point is that while I do understand (somewhat) what this mother/author was saying, I also feel like who better to help a disabled child than a parent who has the same disability and knows exactly what the child is going through?

Michelle*:  A few disclosures first: I do not have OI. I do not have children and am beyond childbearing years. During those years, genetic testing was not available or not common. I work with developmentally disabled adults.

So in a “what would YOU do” scenario, I can honestly say I don’t know. It was something I never considered and something that cannot be a reality in this lifetime.

However, I do believe in reincarnation and karma. Each of us is born with the circumstances we need. Life is joy and suffering for all who enter. There are a myriad of circumstances we can experience each lifetime. Each prospective parent has their unique set of circumstances. There is no right or wrong. Each individual has to come to their own decision. The soul will not die.

(* = Names have been changed.)

The responses and candidness of these women are ones that I truly respect and value.  Hearing from women who were able to have children, the child of a disabled parent and a childless disabled woman, and one who works with those with disabilities provided a very wide spectrum of opinions to this very sensitive and life-changing topic.

Final Thoughts:

The article proved to be one that was a serious conversation starter, especially since it has went viral online.  For me, the article made good points about a mother’s worries, but I felt that the overall tone was problematic.  The tone I received from reading it was that having a healthy baby is “good,” and a child having OI, or any other disability, is “bad” or “regrettable.”  That kind of thinking plays into dangerous misconceptions about the quality of life disabled children may have, and it teeters on the ableism realm.  One point I do want to make:  having a “healthy” baby does not mean that life will be a guaranteed walk in the park for parents, whether the parents are disabled or not.  In the same respect, having a disabled child does not mean that life will be riddled with chaos and stress.  Every child is different, and your parenting experiences as a disabled parent will vary.

The unbalanced tone in the article did not shed more more light into what a disabled child could learn from her or his disabled parent.  Living with a disability is hard, but I do believe that having a parent with the same disability as you does softens the hardness of the experience.  Personally, if I have a child with OI, I would teach her or him to be proud and confident about their disabled status.  In order to empower them to get to that point of acceptance and love, I would share my struggles about being disabled so that they would know that their feelings are not weird or unheard of.  I believe that being so candid as a disabled parent is the biggest responsibility you have to your disabled child.  Honestly, if a parent, or relative, had had OI when I was growing up, I know for definite that it would have positively influenced my outlook and self-love about being disabled.

Ramp Your Voice on this Topic, Readers!:

What are your thoughts about the article, and the responses my dear friends gave about it?  Do you believe that the tone of the article was more positive or negative, in regards to being a disabled parent with a disabled child?  If you are a disabled parent, do/did you worry about passing your disability onto your children?  What are/were your fears and concerns about raising a disabled child?  What lessons would you teach your child about loving their disabled life and body?  Share your perspectives and opinions on this matter!

(Featured headlining image:  Courtesy of Rob Marmion//Shutterstock.)