#IAmAPreExistingCondition: Medicaid is the Lifeline that Saved Me

I owe my health and ability to live in this disabled body to Medicaid.  It is the social program that is will be under attack if the Senate accumulates enough votes for the American Health Care Act (AHCA).  The AHCA is the replacement bill for the Affordable Care Act (ACA), better known as Obamacare.  There are provisions within the AHCA that will impact those of us with pre-existing conditions and/or utilize Medicaid.  

The disabled community, including myself, have been very vocal as to the harm the AHCA could cause for us.  I’ve taken part in discussing my own story & urging our Senators to vote “no” by using the #IAmAPreexistingCondition hashtag, and being interviewed by Al-Jazeera along with other advocates about the bill (click to view Part Iand Part II).  

I wanted to share the article I wrote for the Center for Disability Rights this month that outlines why Medicaid matters so much to me, and why the AHCA would be dangerous for my people.  We need more disabled voices proclaiming that healthcare is a human right that should not be deemed as an optional circumstance to acquire.  

#IAmAPreExistingCondition. I owe my very life to the lifeline program called Medicaid.

Medicaid is how I was able to reach the age of 31 years old, when I was given the life expectancy of 4-8 years, due to having Osteogenesis Imperfecta (a rare condition that makes the bones fragile). Medicaid is how my Grandmother was able to ensure I received the medical services, supports, and resources I needed to grow and develop as a child.

Without Medicaid, my family would not have been able to pay for the rodding surgeries I needed that gave me the ability to walk and stymie the curvature of my spine. I was fortunate to have doctors who understood my disability, and how to properly care for my disabled body. Receiving the appropriate medical care for my type of OI ensured that my health needs were being addressed correctly; I did not endure suffering due to a lack of incompetence or medical neglect. Sadly, many of us are not so lucky so say this, especially if we receive systems-based healthcare.

Medicaid also allowed me to receive physical therapy, occupational therapy, and other supports while in school. This is a lesser known truth about Medicaid that has come to light recently. This program assists with covering the costs of special education services and equipment that many school districts may have financial struggles to provide to disabled students. I remember receiving such services from the time I entered Kindergarten in 1991 to when I graduated in 2004. I could not imagine what my time in school might have been like if these resources were not offered that led to both my personal and academic successes.

Medicaid is why I am here. Medicaid has allowed for me to be an independent person by being a recipient of the program. Possessing a pre-existing condition and being a part of healthcare programs like Medicaid is not a privilege – it is a right. Having healthcare as a disabled person is a priority for me to thrive and live my life without barriers, particularly those that are systemically created.

It is a tremendous injustice to live in a country where a debate about who should have access to a right like healthcare even exists. To create a culture where a vital need like healthcare is considered an optional circumstance displays how out-of-sorts our society is. The right to live or die should not depend on how “healthy” or “burdensome” a person is to the healthcare system. The mere hint of “worthiness” forces us to take a step back from the progress that we have made in this country.

It is important for those we elect to be on the right side of the issue, and choosing to allow those of us with pre-existing conditions to gain access to appropriate healthcare is not something legislators can nor should falter on. Medicaid is worth protecting and upholding because it has proven to a literal life-saver so many of us, including me. We cannot deny or dismiss the lives that has been changed by Medicaid, many of whom are individuals we know and love, or even ourselves. We cannot view the right to healthcare from an abstract angle – people’s very lives will be impacted if we do not see and hear from those who are demanding that Medicaid and other healthcare programs are not significantly weakened to the detriment of all.

I am thankful that Medicaid exists, and hope that our legislators understand how necessary it is to our community. We must raise our voices to be heard, and fight to protect programs that gives us freedom and empowers us to live boldly as a people.