Tuesday, January 5, 2010

Does physical disability make a parent less fit?



There’s been a lot of discussion in the blog community this past week about the rights of disabled parents to care for their own children.


The Chicago Tribune has been following the story of Kaney O’Neill, a 31-year-old woman with quadriplegia who’s being sued by her ex-boyfriend and the father of their son Aidan, five months, for full custody, charging that her disability “greatly limits her ability to care for the minor.”

O’Neill – who has no use of her legs and limited use of her arms – worked with rehab staff for months before Aidan was born to build her physical strength and put adaptive baby equipment in place. She’s never alone with her son and has the assistance of a full-time attendant, her live-in brother, a mother who helps on weekends, and a trained service dog. A good overview of the case can be found at the New York Times’ Motherlode blog.

Still, headlines asked: Can a quadriplegic woman be a good parent?

It reminded me of a column by a single mom with cerebral palsy we ran in BLOOM eight years ago. Lisa Jones, then a health planner, was raising two daughters aged four and 10 (see photo above). She used a power wheelchair and had minimal use of her hands – perhaps not unlike O'Neill's level of physical function. This made it challenging to lift her daughters when they were babies, to support them as they began to walk, or to push a stroller. 

How did she do it? I wondered.

Lisa addressed the practical challenges of caring for her daughters' physical needs in this piece below, which I think is as relevant today.

‘I know that I’m raising really good girls’
By Lisa Jones

My philosophy is that even if I wasn’t disabled – and maybe because I am – it takes a whole village to raise a child.

My name is Lisa Jones and I’m raising two girls – Laural, 10, and Emily Grace, 4 – on my own. I think my role as a parent is to guide my daughters and help them along, but my family and friends also play a huge part. When parenting with a disability, I think it’s important to embrace the fact that we are all interdependent and we each have different skills to contribute in raising happy, healthy children.

I have cerebral palsy and work as a health planner. I use a power wheelchair and have limited use of my hands.

When I was growing up, I always knew I wanted to have children. I knew I had a lot of stuff to pass on to a child and that I could help a little person become a really good individual. I wasn’t exposed to the common stereotypes that suggest a person with a disability is somehow less of a parent, so it came as quite a shock when some of my relatives expressed these sentiments after I became pregnant with my first child.

In spite of this opposition, I believed in myself, and since my children were born, I’ve rarely dealt with attitudinal barriers. The greatest challenges I’ve faced involved caring for my girls physically during their early years. Because I have poor fine motor skills, I couldn’t easily lift my children when they were babies, support them as they began to toddle about, or push a stroller.

I met each of these challenges through problem-solving, trial and error and the fervent belief that I would be able to work something out. Many of the adaptations I came up with were based on simple ideas. For example, when Laural was born, my father built a crib with a side that slid away so that I could wheel right up to the crib. The crib was at a perfect height so that I could feed and change her there.

In order to lift Laurel, I would roll her up in a receiving blanket, then grasp the sides of the blanket and pull her onto my lap.

I couldn’t push a stroller, so in order for us to go for a walk, I figured out a way to carry Laural – who was then seven months – on my lap while I pushed my wheelchair. I made a padded apron that I would wear, and which Laural could lean against. It included a fabric strap that fit around Laural’s chest. Then I had my wheelchair repair store make an extra long seat belt that fit around Laural and me.

When Laural was first walking, I took her out wearing a harness with a long strap that I held. I would take her to enclosed playgrounds so that she could run freely without any danger of running away.

What I have found, over the years, is that my daughters are incredibly resourceful, adaptable and safety-conscious because they know that I can’t rescue them like other parents can. I’ve noticed that able-bodied parents are very protective of their children. I can’t be, so my children have become very good at self-managing. They understand – at a level far beyond any other child – that if they take a physical risk, they’re on their own. I support them by giving them the confidence that they can figure out situations and by allowing them to participate in decision-making.

For example, I remember when Laural was about 18 months, she climbed up on the back of our couch and began inching along the narrow top. I said “You better be careful, because Mom can’t get you down, and if you fall, you’ll really hurt yourself.” I couldn’t scoop her up like other parents, all I could do was sit beside the couch and talk her through it. I could see her reasoning it out, figuring out whether she could move a little further, then deciding it was a bit too scary. She pulled her legs back over the front and was able to fall safely onto the couch.

What has made the difference in my ability to raise my daughters has been the support of my family and friends. Transportation is a big issue, as I don’t drive. One of the ways my parents help out is to drive my children to school and to other activities. One of my friends picks my kids up after school and that’s her contribution to my “little village.” I do things for my girlfriend’s children in exchange, such as helping with French homework. It’s that interdependence with other people that is so essential in raising children. Everyone has different skills, but we share what we can give.

During Emily Grace’s first year, I received five hours of attendant services each day. Today, I receive two on weekdays and three to four on the weekend. Our attendants primarily meet my personal care, grocery and cooking needs, although they do help the girls with small things like braiding their hair. When the girls were young, the attendants spent more time helping them with bathing and dressing.

When Laural was a baby, it used to bother me that I couldn’t do everything for her. I missed the feeling of being able to lift my baby up easily to my shoulder, or of being able to dress her when she was tiny. What I’ve learned is not to sweat those things. I focus on what I am able to do, and I do it as often and fully as I can. I know my kids won’t grow up with a complex because I didn’t wash their hair when they were three months old, or because someone else tied their shoes. Regardless of who’s braiding their hair, they know that I’m their mother. They come to me when they’re hurt, when they want direction or when they want a hug.

I’ve always been open and honest with my daughters about my disability and talked about why I do things differently. In turn, I’ve also given them the licence to do things in their own way.

I think my disability has given my children the ability to be hugely independent, adaptable and able to reason for themselves. It’s also given them a strong sense of social justice. Laural and Emily Grace don’t see disability or diversity because they just accept that everyone does things differently.

As a parent, I’ve gained a real sense of peace, fulfillment and purpose. I know that I’m raising really good girls – not in terms of them being well-behaved, but in terms of them being good people at their core. I hope that in hearing my story, parents of children with disabilities will see that their child can have a full, rich life – one that might even include children.

8 comments:

I am so terribly grateful for this post; for you blog, actually!

I think many people who are parents (who do not live with a disability) can relate to Lisa Jones when she writes: "When parenting with a disability, I think it’s important to embrace the fact that we are all interdependent and we each have different skills to contribute in raising happy, healthy children."

I know that as a new parent, and especially because of my fear of what it could mean to have a son with Down syndrome, I should have accepted much more support than I did.

I think Lisa Jones writes about many issues but the one that stands out to me the most is what her daughters have learned because of Jones' physical limitations imposed by cerebral palsey. Her daughters are have learned much more about ability, humanity, community, and most likely have developed a fine tuned intuition about people, than most children. They're are lucky beyond belief, IMO, and Lisa Jones should be applauded for giving her daughters such a fulfilling lifelong gift!

Frankly I find it astounding that Kaney O'Neil is being subjected to the prospect of losing her child because of her disability. Astounding and revolting, actually. It just smacks of paternalism, the nineteenth century, even and when I read the story I thought at first that there must be something MORE because how could this happen in 2010?

Hi Lianna -- Great to see you here! I also got a very strong sense that Lisa's children had benefited from her disability and approach to life because it made them flexible thinkers who were confident in themselves and nonjudgmental and accepting of others. I think growing up with the message "we're all different, and it's okay," is a gift.

Hi Elizabeth -- I had a similar reaction. I assumed that she must not have prepared herself with support in advance, and was so surprised to read about the great lengths she went to to assure her child's needs were being met.

Hi, our family has a deaf/blind mother (me, with some usable vision and hearing), a quad father and a blind father. My five-year-old twins father is a quad, and my new baby's father is the blind one. I live with the blind one, and the quad lives just three blocks down the street. (Hard to explain...but it works).

Basically, we do this by all three of us working together to do what needs to be done. We don't have "my kids, his kids, your kids", we have our kids and it takes all of us to raise them. We do have outside help from time to time, just like any family. But all the kids are doing very well.

But we have dealt with the assumption that we can't raise them ourselves. When my twins were born prematurely and had some eating difficulties (common in premature infants) we were told that "if left alone, we couldn't feed our children." The fact was, no one could feed our children, not even the feeding experts. We just had to get through it until they matured enough to have a rooting/sucking reflex and then they did fine. The point is, people tend to look at common problems all parents may face and blame them on our disabilities. Thankfully, we fought through that and were able to move on with our kids. But definitely NOT FUN when you are already the mom/dad of newborn twins with health issues.

Lexie -- thanks so much for sharing your experiences! It sounds like you have an amazing relationship with the Dads that benefits all of your kids. Also -- your comment that people tend to blame a parent's disability for an issue with a child that is common to many parents is telling. Do you use sign language with your kids? My son uses sign and I'm always interested to hear of other parents using it. Do you have a blog? Your kids must have a very rich outlook on life and appreciation for diversity.

Just curious... was there ever a father involved in the creation of this sweet family, or did Lisa get pregnant via a sperm donor?

I DON'T KNOW WHY I'M SURPRISED TO FIND THERE IS SUCH A COMMUNITY OF DISABLED PARENTS. IT GIVES ME INSPIRATION TO SEE THAT PEOPLE WITH DISABILITIES ARE WANTING TO SHARE THEIR EXPERIENCES OF PARENTING WITH A DISABILITY WITH OTHER PARENTS IN SIMILAR SITUATIONS.