Being a parent should not stop with having a physical disability.

Since the dawn of our country, we have sought to ensure freedom of movement as a fundamental right. As early as the Declaration of Independence, our nation regarded this freedom as crucial to maintaining democracy. However, for people living with disabilities, this freedom of movement is restricted by bureaucracy and ableist health policies. 

One of the most important resources available to people with disabilities like myself is our country’s Medicaid system. As a person living with Primary Progressive Multiple Sclerosis, which has put me in a wheelchair, Medicaid is critical to my survival. Our current Medicaid system is funded and administered on a state-by-state basis with little to no federal oversight. What this means is that certain states like New York offer comprehensive health coverage, and allow people like myself to live with independence and dignity. In contrast, in many other states, Medicaid is underfunded and is unable to meet these basic needs. 

In 2016, my 3-year-old son was whisked out of my life in NYC when my ex left for Texas, 1700 miles away. Due to the inequities of Medicaid in Texas, I would lose much of the agency and assistance that New York provides, and would have no choice but to be in a nursing home.

With no other option, I filed a petition for his return to NYC. My case was deemed low priority as my son was not in danger and the court had more pressing cases to give precedence to. Now it’s been 8 years. Birthdays, holidays, soccer games, being able to share my love of art and fatherly advice, my child’s developmental milestones, and much more have instead been replaced with courtroom visits, daily video calls, and countless emails with lawyers while I sit in my apartment and stare out the window. 

Flash forward to today: I continue the fight to see my child. My experience in navigating the Family Court system has led me to uncover a minefield of limitations placed on me and other people with disabilities by laws and practices on the State level. Since the passing of the Americans with Disabilities Act in 1990, many of the civil rights protections for people with disabilities have been expanded upon within the federal systems, but not in some of the state ones. While many New York State laws protect children and keep families together, they conversely allow for ableist hegemonic practices that silence people with disabilities, and prevent them from exercising their right to be involved and active parents.

Even in progressive New York State, ableism in family law has a strong foothold, thanks to biases within the court system and the “best interest of the child” standard which includes the “mental and physical health of the parents”. In many states, it is presumed that a parent needs to be physically able to care for their children, especially those under age 12. While it is true that physical care is involved in parenting, that should not be the only consideration of what makes a good parent. 

A parent is someone who loves, instills values, and provides guidance to their children. Yet, because of my disability, I am being forced to continuously defend to able-bodied people why I am a good father and what I can offer my son when he is with me. Instead of understanding or empathy, I am often met with legal court orders to comply with numerous provisions that overreach into my parental decision-making and parenting time. While I have joint legal custody, my ex's final say in decisions about my child’s life renders me legally incapacitated to give input into his life and time with me. While I acknowledge the need for a physical care provider for my son when he is with me, “who” takes care of him should be my own decision to make as a parent.

Currently my mother and brother are now not just a grandmother and an uncle but are required to be “approved” by the Court as care providers for my son. While I disagree with the Court’s order to limit in-person access to my son, at the end of the day, if I do not comply, my already limited parenting time and time with my son will be potentially further reduced.

Gandhi has been quoted to say, a society is judged by how it treats its most underserved. The NY Family Court has let down thousands of families due to underfunding and the overburdening of the many people that look to it for support. And the most marginalized group are those with disabilities.

As New Yorkers fight to bring representation to its diverse population, those with disabilities also need people in the court that understand our ability to parent despite the problems we face. Being a parent should not stop with having a disability. A grim reminder: it is only a matter of time before the wear and tear of life sends us all off to “independent living facilities”.

I will do whatever it takes to bring my son back into my life, and regardless of the outcome, I have faith and take comfort in the fact that the next generation of disabled activists will pick up the mantle. I will continue to fight for myself, my community, and for Jay. 

I am calling upon our lawmakers and family court professionals for there to be major systemic change in the way people with disabilities are treated.

In terms of Medicaid:

Medicaid needs to be made more equitable for all people with disabilities so that someone in one state doesn’t lose their independence that they would maintain in another. This means states should receive equal federal funding, or there should be a stipulation that all 50 states need to help people with disabilities remain independent.
In terms of family court:

The disability of a parent should be eliminated from being included in “the best interest of the child” statute. 
I agree with the National Council on Disability’s recommendation that family court professionals (judges, lawyers, evaluation personnel, etc…) should receive mandatory training about working with parents with disabilities and their children. It should also be a mandatory part of their education before entering the workforce.
States need to pass legislation that ensures the enforcement of ADA and the protections of parents with disabilities rights.
It’s long overdue. The United States should ratify The United Nations Convention on the Rights of Persons with Disabilities (CRPD) which  reinforces the rights of people with disabilities to create and maintain families.
Please join me in signing with your support which will finally make a difference in righting much of what is going on in my life and the lives of so many others.