Last April, I turned 60—a life filled with wonderful experiences and important challenges. At four months, I had polio and spent a month in an iron lung. While I survived, polio left me with lifelong sequelae, a physical disability requiring significant support. And since then, I’ve also been a wheelchair user.
Growing up, I didn’t see myself as different from the other kids. I played with my siblings, went to preschool, and had friends in my neighborhood. But society didn’t share my view. According to those around me I was “special” and needed “special care” and attention.
My parents struggled to find a primary school for me. As is often the case for people with disabilities, school administrators claimed they couldn’t meet my “needs” and required I attend with a personal assistant.
Thankfully, my parents disagreed. They believed—rightly so in my case—that having an adult accompany me at all times at school would interfere with my social life and lead to isolation. It would prevent me from being like any other child. Rather than hiring a personal assistant, my parents eventually managed to find schools with accessible buildings and ground floor classrooms – an arrangement worked very well throughout primary and secondary school. My classmates, not an adult personal assistant, supported me with some activities at school, like getting to the playground for recess. And my teachers found ways for me to play the same games. In high school, my parents arranged for the school staff to help me get out of the car when I arrived. Since I was able to drive a car, I had a great deal of independence during my teenage years, just like my peers.
It wasn’t until I started college that I had to hire a personal assistant so I could access education—and other parts of life—on an equal basis with others. At that time, I didn’t have the support of a community of people with disabilities who could answer my many questions: Where would I find a personal assistant? Who would provide the service? And for how long and how much?
While navigating my situation as a youngster, I had countless negative experiences.
Initially, my family and I hired staff from nursing agencies. Many of them would arrive in uniform and referring to me as “the patient” like I was someone who was ill. But while a disability may begin with a disease like polio, as in my case, disability is not the same thing as illness. Instead, a disability is a long-term condition, a part of one’s life, a form of human diversity, as recognized by the Convention on the Rights of Persons with Disabilities. Being labeled “the patient”—meaning someone ill, dependent, or in need of “special care”—had a profound psychological impact. I personally still endure such misconceptions today. Of course, dealing with them at 60, with decades of experience, is very different from facing them at 17.
I had personal assistants—some of whom referred to themselves as “carers”—who betrayed my trust. One took my watch. Another took all my jackets. Others interfered in my personal life, and eventually, even in my professional life, especially as I began working.
Others used diminutives upon meeting me for the first time. Instead of “Mr. Ríos,” I became “Carlitos.” Those personal assistants didn’t last; I asked them not to come back. But I figured, when you’re young and inexperienced, you’re bound to endure deeply unpleasant and disempowering situations.
It is essential that people with disabilities understand their rights and have the power to establish boundaries and how to manage one’s own support system—a system that, in my case, has expanded as I’ve grown older.
This is why it’s vital to ensure that people with disabilities can—and must—control their support systems. In other countries, like the US and Sweden the participation of organizations of people with disabilities is ensured through centers for independent living, which provide, among other services, referrals to personal assistants and gather important information so people with disabilities can make informed hiring decisions. There are highly professional personal assistants that understand their role as facilitators for independent living, but it is essential that people hiring them have the tools to identify the best profiles. The disability community is in the best position to provide guidance on this matter.
Some of centers for independent living also offer skills training so people with disabilities learn about establishing boundaries enabling them to build equitable relationships unmarred by power imbalances. Again, the participation of a strong community of people with disabilities that provides peer support is essential to realizing this. It’s also key that personal assistants receive fair wages, social security, and job protection.
I’m fortunate to have had access to college education and jobs that have allowed me to pay for high-quality personal assistant services, an extra cost of living with a disability. But most people in Mexico cannot afford this and depend entirely on support from their families. This often leads to family members burning out and, all too frequently, neglecting, mistreating, or abusing the person with a disability. States should consider access to high-quality care and human support an essential social protection instead of shifting the responsibility to families.
The Latin American region, including Mexico, is in the midst of discussions about care and support systems, and they must meaningfully involve organizations of people with disabilities. These organizations must be able to not only participate in the design of these systems, but also play an active role in managing and monitoring them. It is also important to understand that the implementation of this system should consider all types of disabilities and the different kinds of human support that may be needed. Many people with disabilities do not require personal assistants but do need other forms of human support. All types of disabilities must be considered in the care and support systems.
In Mexico, that process has already begun. Organizations like Mexicanas con Discapacidad, Yo También, and other organizations of people with disabilities and human rights groups, like Human Rights Watch, are engaged in advocacy to ensure forthcoming legislative frameworks on care and support systems incorporate the rights of people with disabilities and older people. Mexico’s frameworks should address this so people with disabilities can live independently and with dignity on an equal basis with others.
