Mariana Perera ’20 is a Fullbright Scholar and Hackworth Fellow with the Markkula Center for Applied Ethics at Santa Clara University. Views are her own.
How Living with a Family Member with Special Needs Changes Your Outlook on Life
Next year, I will be traveling to Brazil as a Fulbright Scholar to conduct research on the connection between disability rights and democracy. Disability rights have been a personal and constant topic in my life, as my younger brother has multiple developmental disabilities. Being a sibling to someone with disabilities has shaped my life and perspectives, yet as my time in college comes to an end, I have come to realize that disability rights and experiences are not a commonly known topic, especially among those with no connection to disabilities. I aim to share various experiences that have been common or important and may demonstrate some ways in which what is “normal” to one family may be completely different to another. However, I fully acknowledge that everyone’s abilities or disabilities vary and what may be true for my family, may differ from other’s experiences. Our story is only a small part of what living with disabilities is, yet, I hope that these stories resonate with some people and bring new perspectives to others.
The COVID-19 pandemic has affected everyone’s life one way or another. In my life, it has made me think about the many ways that the lives of people with disabilities may have additional implications or struggles every day, but especially during a pandemic. Here are three topics that we might address or consider differently than others:
Education: My brother’s education journey has been a long and tiring one. I have seen my parents struggle to obtain the proper education services he needs to reach success. He requires one-on-one care as he runs away and has no sense of danger. This is key in ensuring his safety while at school, something that was not always available but was critical for his safety.
Addressing each student’s educational needs must be done by every school, however, this may be more challenging when it comes to students with disabilities as each student has different needs that need to be met to reach success. Policies like the Individual with Disabilities Education Act (IDEA) were created to ensure that students are provided a Free Appropriate Public Education (FAPE) and special education according to an Individual Education Program (IEP). Students with disabilities may require special classes or additional support such as aides and tutoring. Others with more severe developmental disabilities may instead focus on individualized goals with regards to their learning, including occupational skills. Being able to obtain these resources is not always easy, however. Schools vary in how they are equipped, how inclusive their classrooms are, etc. The ability to set up a successful IEP then may fall onto parents who have to become familiar with policies and must advocate for adequate resources for their child. For a family, this may take a mental and financial toll if they turn toward legal actions. Similarly, some parents may not know about organizations that exist for this advocacy and resources may be limited to English-speaking families.
The pandemic has exacerbated the struggles associated with receiving adequate education for those with special needs. Many students are unable to attend online classes due to their attention span or need for more hands-on education or therapy sessions. Similarly, their additional needs may require greater involvement by family members who may not have the time or resources. More importantly, students that benefit and thrive from routines have been thrown off from their schedules. These students are then put at a disadvantage and can lose valuable learning time.
Social and Health Services: In addition to educational services and resources, people with disabilities may require extra health services throughout their lives, including specialists, therapies, prescriptions or respite care. These may be expensive yet necessary for a healthy and fulfilling life. Services like care-giving and therapies can especially make a change in one’s abilities and independence. In the case of my brother who is non-verbal and has some behavioral challenges, speech and applied behavior analysis therapies significantly help him and allow him to become more independent and develop certain skills. Without these services, he would lack the opportunity to have a fulfilling life.
Many of the services that the government may provide or assist one in receiving depend on each state, including education. This means that where one lives significantly impacts their opportunities and potential success in life. Bad social services can lead to more struggles and an overall lack of sense of humanity.
Decision-making: If I had to pick one thing that in my life varies the most compared to my peers, it would be my family’s and my decision-making processes. Our choices are not always about ourselves; we have to think about additional implications that may arise. Before college, I did not make decisions without thinking about logistics or their impacts on my family. I did not realize that others around me could possibly make a decision while only thinking about how it would affect them. While the future is unknown, families of people with disabilities may have to think ahead or understand that their choices not only impact their personal lives, but that of others. The choices we make also affect day-to-day decisions like where we can go out, including restaurants—how those around us may respond, and how my brother may respond. We have figured out our own “best” places and times to go out. I have learned to focus on making certain experiences positive and ignoring the negativity that may be expressed by those around us.
However, the pandemic has proven a struggle for my brother as something like wearing a mask or having to wait outside a store is not always possible. He is not comfortable with things on his face in the case of a mask. This makes it hard for us to go places like grocery shopping unless someone can stay with him at home or in the car. Although we make it work, this example demonstrates that things that may seem simple to others become more complicated experiences for those with disabilities.
Overall, having disabilities or living with someone with disabilities poses additional steps and possible barriers that others may not face in their daily lives. Institutions like the government can impact how successful or fulfilled one’s life is. They play a key role in providing resources and services to those with disabilities and their families, promoting a sense of opportunity and humanity. When governments fail to do so, they fail their constituents and contribute to difficult experiences. I believe we must be more aware and empathetic towards others, especially those with disabilities. I am passionate about educating others in hopes that they will help enact change through better and more inclusive policies. My brother and all people with disabilities deserve to be happy, understood, and live a fulfilling life.