A Delicate Balance: Parenting, Disability and Public Policy

Molly and Tom have been dating for 3 years and have recently gotten engaged. Before tying the knot, they decided to undergo pre-marital counseling. Following the stereotypical script for things that are discussed in pre-marital counseling, the counselor brings up children. Both Molly and Tom discuss possibilities of adoption and/or natural childbirth during the session. Both of them have disabilities and like the possibility of adopting a child with a similar disability. However, the therapist quickly changes the course of the discussion to ways they plan to accommodate having a baby. He then proceeds by explaining to the couple that, “in order to avoid having Department of Children and Families (DCF) involved and/or having your children taken away from you, you need to have a trial run. Set up a baby room, have a baby doll that you practice with- the whole nine yards, because you need to ensure that you have it all figured out before DCF shows up.”

Before DCF shows up? Meaning, they will definitely show up? Do people really have to have every move figured out before having a baby?

No, Tom and Molly, ‘people’ do not. Parents with disabilities do.

According to The National Council on Disability, 37 states currently use disability as grounds for termination of parental rights. Further, current statistics show that 70-80% of people with psychiatric disabilities and 40-80% of people with intellectual disabilities experience their child(ren) being removed from their custody. People with physical disabilities are also at a tremendous disadvantage. Clearly, there is a huge stigma surrounding the idea of raising a child while having a disability.

Where is this elephant in the room and how can we talk about it?

If we want to get down to the nitty-gritty of what “disabled” means, we can simply define it as a person doing things differently than society has prescribed. For example, a person with dwarfism utilizes a step stool in every day life, whereas the average person may not even own a step stool, much less have one in every room of the house. Or a person with a learning disability may use a screen reader to assist in using a computer, while people without learning disabilities may not even know what a screen reader is. Thus, people with disabilities do things differently.

Differently often makes people nervous and/or curious. This is the point that many progressive disabled people begin to get nervous, because this is when they usually start hearing things like, “I had never thought of doing it like that. You are so inspiring!” Add children to the mix, and suddenly the inspiration porn evaporates and pure nervousness boils. (Side note: if you are confused by my use of porn and children in the same sentence, please Google “Inspiration Porn”)

Even without a disability, there are very clear guidelines in parenting circles across the country for the “right” way to raise a child. Ask any new mom the reaction she received when introducing the idea that she was not going to breast feed her newborn or that she was going to use cloth diapers instead of disposable diapers. This is serious business, people, and it is not taken lightly. Many new moms start the process thinking they have completely ruined their child’s life in their decision not to breastfeed, due to the responses they have received on the topic.  Now imagine the idea of adding a step stool or a personal attendant to the process of changing a diaper. In our society, we just are not able to comprehend such adaptations. Surely, the child is being harmed, right?! Actually, according to studies by David Shade, “The available evidence suggests that although parents with disabilities may have a very different approach to parenting, the presence of a disability (physical or mental) is a poor correlate of long-term maladjustment in children.” It seems to me that if there is one thing we need to be giving the next generation that we currently are not, it is flexibility in thought. There is more than one way to do something and the more we can give the next generation this ability to think outside the box, the better off we’ll all be.

Historically, the best way to reverse such entrenched thought in society is through policy. Oftentimes, policy has to lead the way before our culture can catch up with its social attitudes. Thus, HD241 was recently introduced in Massachusetts to cover this exact topic. In short, this would prohibit discrimination against adults with disabilities in family and juvenile court proceedings. Meaning that when DCF is, in fact, called on Molly and Tom, DCF cannot calculate disability as a negative factor for determining custody, unless there is a direct cause and effect between the parent’s disability and the alleged harm to the child. If there is, they must then state why this harm could not be prevented or alleviated with an accommodation for the disability, including adaptive parenting equipment or supportive parenting services.

Overall, I believe that such legislation, if passed, is a big win for the disability community. However, I still am not sure that this will be the silver bullet to the problem. Unfortunately, we are still asking someone to judge whether or not an accommodation that we have made is adequate or not. I could even imagine a scenario in which the accommodation is itself considered a risk. For example, I use step stools throughout my life and might even consider the stool to be an extension of my own body. At any given time, I know exactly where the parameters of the stool are in relation to my body. I would even dare to say that I could go up and down on said stool with an egg on my nose and still keep the egg from breaking. However, for someone who has never used a step stool, this could appear very dangerous. What if I fell? What if I lost my balance while holding a baby? If put to the test, I would be asking for someone else to deem from his or her experience whether or not I am safe on a stool with a baby. In policy, this becomes very tricky. How else does one make such judgments, if not by including their own experiences?

Maybe this type of incremental change is the best we can do for right now. Clearly, this policy would be light years ahead of the status quo. Robyn Powell, the attorney from The National Council on Disability who was a key contributor to drafting the legislation, states, “Lots of things need to happen to ensure equality, but I believe this will help and other states should take notice.” Powell authored NCD’s ‘Rocking the Cradle” Report which offers model legislation that HD241 is based off of and would be available to other states.

The end goal should be to create policy that supports disabled parents rather than assumes their incompetence and forces them to prove otherwise. Maybe some day social attitudes will have progressed to the point that the focus is on finding solutions rather than making judgments. For sure, legislation like HD241 is a huge step in the right direction. A recent Department of Justice (DOJ) decision may turn out to be an even bigger step. Just this week, the DOJ’s Civil Rights Division issued a letter to The Massachusetts Department of Children and Families (MA DCF) stating that their current practices of determining that disabled parents are unable to care for their children without making any effort to provide the supports and services that would be needed to make this possible is in violation of the Americans with Disabilities Act and Section 504 of the Rehabilitation Act. This letter indicates that if these policies are not changed by the MA DCF, which currently denies appropriate supports to disabled parents, the DOJ will pursue litigation to force them to.

We will know we have really arrived when the disabled person doesn’t feel like they have go to the extent of balancing an egg on their nose.