Mackenzie's Voice: Living with Cerebral Palsy

Summary

Mackenzie is a 17-year-old with cerebral palsy who shares her journey of striving for independence despite the daily challenges of her disability. With the support of her family and the aid of technology, Mackenzie navigates her academic life, social interactions, and personal aspirations. From overcoming educational hurdles and discrimination to seeking authentic friendships, her story highlights the resilience and determination of a young woman determined to live life on her own terms. Her message is clear: disability is just one part of who she is, not the defining feature of her existence.

Takeaways

• 😀 Mackenzie is a 17-year-old girl with severe cerebral palsy, who relies on technology and assistance to lead an independent life.
• 😀 Many people mistakenly assume Mackenzie has an intellectual disability due to her reliance on communication devices and wheelchair use, but she is intellectually capable.
• 😀 Mackenzie faces daily challenges such as needing help with basic tasks (e.g., brushing hair, using the bathroom) but values her independence and strives to do things herself.
• 😀 She uses a specialized talker to communicate, typing one letter at a time with her big toe, a method that requires significant patience and time.
• 😀 Despite the frustrations and limitations imposed by her disability, Mackenzie maintains a positive outlook and believes in the importance of staying hopeful and focused on enjoying life.
• 😀 Mackenzie’s parents have been supportive from the beginning, providing her with the necessary care, but also allowing her as much independence as possible.
• 😀 Mackenzie is academically driven, taking a full academic course load and working hard on her homework, often typing for hours to complete assignments.
• 😀 Mackenzie has faced discrimination, such as the challenge with her NCEA speech, where the use of her communication device was initially not accepted, leading to a fight for fair treatment.
• 😀 Mackenzie values deep friendships and expresses frustration about the difficulties in forming connections, particularly with her peers who may struggle with understanding her communication device.
• 😀 Despite facing obstacles, Mackenzie is determined to pursue her goals, such as going to university, and she does not see her disability as a defining limitation but as one part of her life.
• 😀 Mackenzie wants others to see disabled individuals as normal people with hopes, dreams, and desires for independence, beyond their disability.

Q & A

What challenges does Mackenzie face due to her disability?

Mackenzie faces challenges in communication, mobility, and independence due to her cerebral palsy. She relies on technology, like a computerized talker, and needs assistance for tasks such as getting ready for school and going to the bathroom.

How does Mackenzie communicate despite her inability to speak?

Mackenzie communicates using a computerized talker. She pre-programs common phrases and uses her big toe to type out more complex responses letter by letter.

What is Mackenzie’s perspective on how others perceive her disability?

Mackenzie feels that others often perceive her as intellectually disabled due to her wheelchair and reliance on technology. She believes people are surprised when they realize she is a nearly 17-year-old young woman with a full intellectual capacity.

What impact does Mackenzie’s disability have on her school life?

Mackenzie attends a mainstream school and takes a full academic course. However, she faces challenges such as longer homework times due to her typing method and struggles with the extra pressure of exams. She also faced discrimination when it came to completing her speech for the NCEA level one English exam.

How does Mackenzie handle the frustration of her disability?

Mackenzie acknowledges that everything about her disability is frustrating, but she stays positive. She understands that dwelling on her frustrations would waste her life, so she focuses on the good aspects of her life and maintains a positive attitude.

What is Mackenzie’s goal in life despite her disability?

Mackenzie’s goal is to live an ordinary life, just like any able-bodied person. She is determined to overcome obstacles and pursue higher education, aiming for university despite the challenges her disability presents.

How does Mackenzie manage her academic workload?

Mackenzie works hard to keep up with her studies. She spends several hours typing out her homework using her big toe. Despite the extra time required, she is committed to achieving good grades and plans to attend university.

What social challenges does Mackenzie face in terms of relationships and friendships?

Mackenzie struggles to form diverse friendships because some peers are uncomfortable interacting with her due to her disability. The pace of conversation and the reliance on her talker can also make socializing more difficult. However, she values her close friendships, such as with Darius, who accepts her without judgment.

How does Mackenzie feel about mainstream activities like school dances or getting a driver’s license?

Mackenzie does not see the appeal of activities like school dances or getting a driver's license. She describes herself as not being interested in those things, which is part of her unique personality. She prefers deeper, more meaningful interactions over what she considers frivolous pursuits.

How do Mackenzie’s parents support her independence?

Mackenzie’s parents support her independence by encouraging her to make choices where possible. While they help with many physical tasks, they allow her to make decisions, such as what to wear or what to eat. They respect her autonomy, even if it means accommodating her specific needs.