A Lack and a Forced Awareness of Disability

What was your first interaction with an individual who had a disability?

I realized my first memory was at around 9 years old. I helped my great aunt feel where the buttons were on my cassette player and telling her what their function was. She was almost completely blind and I did not know her. My only bias at the time was that I did not know her, which was uncomfortable, and that she needed assistance to do things. Until I had my son, I only had brief interactions with individuals with disabilities which I thought did not affect me personally nor my daily life.

Oh boy was I wrong!

It is only recently, as my son nears adulthood, I realize that what I needed most when I first learned my son had issues was a supportive community. One with clearly marked resources to help me get through the challenges that I was to face daily as a caretaker of an individual with different needs. However, what I got was the 'Lack of' what I needed. Additionally, not only was I entering a different world, but also an entirely different reality where people did not talk about how to deal with the everyday issues. I struggled.

I chose not to think about my struggles and only begun to grasp the depth, time, and complexity of those struggles during my time as a master student in my school counseling program. As counseling students, we are trained and required to reflect on everything: thoughts, feelings, experiences, everything and then writing about it to receive feedback. Reflecting on those things and reflecting on those reflections, I think, is not a typical occurrence for people not in the field of mental health. It was 100% NOT something that I did prior to studying in this program.

There is a lot of research done associated with disability, especially associated with therapy and education and I felt like I was standing in the middle of a void with experts all around me. On the one side are the academic and medical experts doing reseach to provide knowledge and education, but are standing from the outside looking in providing what seems like answers to deal with the problems of disability. On the other side are the people who say that disability can be cured and it can be done through natural means. The information that I needed was not even suggested to me when I was told that "something was not normal" with my son. Nothing, not even a support group was suggested to me by professional and there was nothing that prepared me for living in the world of disability.

I wish someone had told me: 'It is going to be challenging every single day. You may want to cry, screem, or shut down when things get hard. But you can and will get through this one moment at time. Celebrate the small successes and take care of yourself so that you can care for that amazing human being that is your child. You can do this'. I also needed is a list of community resources, the contact information of someone to ask questions to, and a specific needs play group/ support group that met weekly.

My aim with this blog is to provide a connection for those who do not know where to start concerning disability. I welcome you to join me as I reflect on my life experiences, the challenges, frustrations, lessons learned, and the successes that have shaped my perspective as a caretaker for an individual with disability.