The ADA is Turning 26: My Rights as a Parent are Not Protected

Twenty-six years ago, through the Americans with Disabilities Act (ADA), our nation committed itself to eliminating discrimination against people with disabilities. Despite the tremendous progress we have made in improving the accessibility of our streets, buildings, and public transportation, the ADA has not protected the rights of parents with disabilities. The ADA and other disability rights legislation do not explicitly protect the rights of individuals with disabilities to be parents. Most people don’t have their fundamental rights to be parents questioned. Yet, for many individuals with disabilities, becoming a parent is often actively interfered with and overtly discouraged.

As detailed in the 2012 government report issued by the National Council on Disability, “Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children,” parents face substantial discrimination by the child welfare system, are more likely to lose custody and visitation disputes, and are often denied access to adoption or assisted reproductive technologies.

Why is becoming a parent and maintaining parental status such a fundamental problem for people with disabilities?  Research suggests that parents with disabilities are stigmatized because of assumptions about parenting capabilities, and these parents are often held to a higher standard of parenting than non-disabled parents.

As a parent with a disability, I fundamentally am aware of how I parent and how I am perceived. A fear shared by many, unfortunately confirmed a few weeks after my son was born. I detailed my experience on my blog in my post: “Life on Hold.”

I have experienced the misguided attempt to have me “prove” that I am a good parent as rational for withholding childcare assistance that any parent may need.

When my son was around eight months old I got a terrible flu. I was already exhausted and this flu sent my body into true rebellion. For 48 hours I felt like jelly, I melted into my bed feeling as if my muscles were hanging off my body.

Like many moms, when you get sick you need help managing your busy life with a baby. I turned to a family member for support, which they provided, for both my baby and me. But I heard an expectation around childcare I didn’t expect:

“I don’t treat you like you have a disability. I push you to do things that maybe you might not think you can because of your disability. I don’t help you out that much with your son because I know you can be a mom.”

It was a frustrating conversation and shocking realization that someone, so close to me, indeed so fundamental to my daily life, could have such a lack of understanding of the meaning of assistance when you have a disability.

I have Myasthenia Gravis, a non-progressive form of Muscular Dystrophy, I got sick at 8 and diagnosed at 18. For the most part, unless you inhabited my body, to the outside observer you might not be aware of how my condition impacts my daily life. Since my condition is autoimmune, my experience of symptoms can vary based on what is happening with my body. All women experience exhaustion and fatigue during the first year of a having baby, whether you have a disability or not. No one would say to these women, “I don’t give you help… or think you should hire help, because that would be telling you that you are a fake mom, you’re not living up, growing into your ability to learn to be a mom.”

My family member’s view of my need for assistance, whether through a family member, or a personal care assistant (also called attendant or caregiver), is a view shared by a significant majority of the population.

Needing help is linked to dependency. Temporary dependency, such as the case of limited illness or motherhood, is acceptable but the need for permanent, ongoing assistance quickly invokes fear of feasibility, fundamentally linked to the ability to pay. The fear of violating the bootstrapped, self reliant, American identity, to be reliant, makes you a member of the welfare system. This combined by the frequently invoked image of the “silver storm” – the ocean of baby boomers aging into needing long-term care assistance, relying on all of us to pay for this assistance through our social services system, inevitably bankrupting our government and plunging our society into economic doom – creates fear of “dependent parents with disabilities.”

Let me be clear, not all people with disabilities need assistance with their own daily personal needs and very few rely on public sources of money to hire someone to assist them in taking care of these needs. As for any parent, finding reliable and affordable childcare can be a challenge.

Lesley Stahl, best known for her work on 60 Minutes recently released the book, “Becoming Grandma:  The Joys and Science of the New Grandparenting,” urges boomers to embrace the mutual benefits of helping their children provide care to the new generation. Stahl acknowledges the economic need and social benefit of providing this critical support.

Yet, what if you don’t have a parent to provide assistance with childcare?  Or what if you already require daily assistance for your own needs and now have a child?  Many would call into question the fundamental right to have a child. Indeed, a history of government-sanctioned sterilization is a not so distant reality for many people with disabilities.

People without disabilities aren’t questioned if they have the ability to be “good parents” – i.e., the ability to develop thriving, social beneficial, offspring. Why?   It’s assumed they will be wholly, and completely responsible for the economic satiability of children. This is a fallacy – we have a socially acceptable notion of public-financed education and other community/supported programs designed to help children thrive.

Many parents grow into their knowledge, ability, and role of caring for their offspring. They are given permission to learn their weaknesses, to know when, and how to ask for help, guidance, and yes – gasp – actual care. Some rely on paid help, subsidized childcare, and childcare exchanges both informally and formally through parenting co-ops. Yet, when it comes to raising children these non-disabled counterparts are not held to the same stigma associated with getting childcare assistance.

Did it ever occur to my family member, or for that matter, society as a whole, perhaps parents with disabilities have a far greater advantage as parents, because we acknowledge our skills and have inherit practice in knowing when and how to ask for help? Help is available, to learn adaptive ways of parenting, that don’t necessarily wholly rely on others. Organizations like Through the Looking Glass, the national resource center for parents with disabilities help parents find adaptive ways to navigate some of the physicality of parenting.

It is widely-accepted that our displaced, over-scheduled, over-worked society has eroded family-based childcare support. For years, alarms have sounded for affordable childcare options. So, why doesn’t this fundamental question apply to parents with disabilities, without evoking the notion of dependency shame?!

If we are going to ensure the goals of the ADA are achieved, we still need to eliminate discrimination against parents with disabilities and continue to invest in and develop support services for all parents so we can promote the safety, well-being, resilience, and healthy development of all children.