Self Advocate's Corner: Nick Holzthum

One of Nick's Favorite songs: “Where the Streets Have No Name” by U2

Two Words Nick Used to Describe Himself: A Spazzy Philosopher

"I will challenge and confront in myself and others acts or attitudes that do not honor any person as my equal." ~ From the Women's Declaration of Peace, NGO Forum, Nairobi, Kenya, July 11, 1985

At our 2011 Conference on Inclusive Education, we were honored to have Nick Holzthum co-present a keynote presentation about the innovative I Am Norm campaign. Engaging with Nick in this capacity left us wanting to learn more about this young, creative, fierce advocate and we are delighted to share some of his fascinating story with you!

Nick Holzthum is a 19-year-old student at the University of New Hampshire (UNH) in Durham, NH. Nick is in the process of designing his own major at UNH, titled Disability Studies that is integrating the fields of sociology, political science, social work, women’s studies, queer studies, and ethnic studies. He is also seeking a minor in Philosophy.

For Nick, there were four very distinct points in his life that helped to mold him into the articulate self advocate he is today.

The first was during fourth grade, where Nick began to realize he was different and understood how essential it was going to be for him to advocate for himself. During the year, Nick felt that his voice and his rights were taken away from him. Many of the doctors and school professionals in Nick’s life told him and his parents that he required extensive therapies in order to “fix” him. These therapies were only offered during the regular school day, and Nick’s participation in therapy resulted in his missing school, falling behind his peers academically, and losing opportunities for social connection with teachers and schoolmates.

Missing out on opportunities left Nick feeling frustrated and depressed, but at the same time made him think critically about and question the recommendations being made by doctors and school professionals. His schedule was constantly inundated with doctor’s appointments and therapies, but the interventions that were supposed to help cure Nick of his disability ended up hurting him, both physically and academically. Physically, Nick’s legs were turning in so therapists had him wear braces during the night in efforts to correct the turn. The braces restricted Nick’s body’s natural spasms which was painful and kept him up at night, and thus he was constantly over tired. Academically, the plan that the school laid out for him was not working. Nick wasn’t receiving the simplest of accommodations he needed to be successful, such as more time being allotted to him on timed tests due to his body’s muscular realities. This caused Nick to score lower on tests and led to him being treated poorly by teachers. These frustrating circumstances sparked the activist anger in Nick, and he expressed it by refusing to attend school until he was included back into the general education classroom full time. Nick’s parents encouraged him to stand up for his rights. Their perspective was that if the system (doctors and professionals) would appreciate Nick as he is, Nick would have rich opportunities and develop into his own unique person.

Even though Nick learned how to be a self-advocate in the fourth grade, he couldn’t help internalizing some of the feelings and emotions that come from being segregated. The system and society’s focus on a cure – the idea that Nick needed to be fixed – felt hostile, and he constantly questioned his perceived worth in society. Nick didn’t know anyone else with a disability, especially one like his. When he was in seventh grade, he attempted to initiate a disability awareness day at school and provided school personnel with ideas on what the day could look like and what would be involved. The school avoided the issue, and while they never officially said no, they certainly didn't help to facilitate Nick’s leadership efforts.

At this point, everything started to change for Nick. A special education teacher at Nick’s school knew of his efforts to bring awareness to disability, and introduced him to Norman Kunc, a self-advocate with cerebral palsy who has been a true pioneer in the international disability rights and inclusive education movements. Nick welcomed the resources, but still felt nervous about outwardly identifying as someone who had a disability. So, he took the resources home, watched videos and read with earnest in his basement, and became incredibly empowered.  Norman’s ideas, experiences, and messages resonated deeply within him. Through Norman’s work, Nick finally felt confidence in himself and found validation in his own questions about society’s perceptions of disability. To use a phrase coined largely by the LGBTQ+ community (a community that Nick feels a strong connection to, though he himself does not identify as LGBTQ+) Nick finally “came out of the closet” and identified himself as having a disability.

Seventh grade marked a big turning point in Nick’s life and his outlook on the world. Norman helped inspire Nick to take ownership of his feelings and ideas, to speak up and speak out, and that enthusiasm has been alive in Nick ever since. His newfound confidence in his own identity and self worth proved to be essential because it wasn’t until Nick was an upper classman in high school that he had opportunities to connect with other young people with disabilities.

The summer before his senior year, Nick was accepted to participate in an internship with the New Hampshire Council on Developmental Disabilities. This was the first time that Nick was able to talk to, communicate with, and feel comfortable around other people with various types of disabilities. It was a very exciting time and he learned a lot about the breadth of others’ experiences and outlooks. It left him wanting more.

The following winter, Nick was invited to the 2010 Inclusion Summit in Washington, D.C. At this Summit, the I Am Norm campaign was born, and his experience there was the highest point in Nick’s senior year. The Inclusion Summit was the first time he met a group of people, with and without disabilities, who had similar experiences as him and shared in his radical ideas about things like disability, discrimination, inclusion, identity, society, and social justice. He and twenty other teenagers came together, synthesized information and launched the first stages of the I Am Norm campaign.

But, even with the exciting opportunities Nick had during his senior year, and his exposure to many people who validated Nick’s ideas and stretched his thinking, transitioning to college has not been perfect. In fact, it has been rough and has felt extremely unjust. On campus, he has been trying to spark dialogue about and bring awareness to disability culture but has been met with resistance. Nick’s goal is to create a student organization for people with disabilities through the student organization that currently houses other diversity related outreach (ethnic, LGBT, etc.). But, this group didn’t see the need for it, claiming that people wouldn’t see disability as a social identity. After learning about Nick’s experiences and struggles with identity, their rationale appears to be exclusive rather than inclusive.

Nick’s positive outlook will not let him be diminished by the injustice he’s experienced on campus. He chose UNH because it allows him to design his own major and because it houses the Institute on Disability, a tremendously proactive and powerful disability advocacy center that has a national reach. Nick’s confidence and charisma are not lacking, and he will continue to make his voice heard on campus and beyond.

When asked what advice Nick has for parents, he immediately shared two messages. First off, Nick feels that all parents should engage with the work of Norman Kunc, specifically his article “The Need to Belong: Rediscovering Maslow’s Hierarchy of Needs” and the article and video “A Credo for Support”. Secondly, Nick hopes that families will talk with their kids about sexuality, relationships, and disability. Too often people simply shy away from these topics, perhaps because they may feel uncomfortable or inappropriate. But in reality, people with disabilities do have relationships and a having healthy dialogue about these topics is an important right of passage for every person.

Finally, Nick wanted to share some quotations that resonated with him in terms of disability and social justice which are included below. One thing is for sure: this young, fiery activist and advocate has a lot to bring to this world, and it is exciting to watch as his journey unfolds.

“When we no longer feel comfortable identifying with the aspirations of the normal majority, we can transform the imposed role of outsider into the life enhancing and liberated state of an independent thinking, constantly doubting Outsider who never needs to fight the physical condition but who embraces it. and in by doing so ceases to be disabled by it."

~ From the book Arguing About Disability: Philosophical Perspectives

"Disability is not a brave struggle or ‘courage in the face of adversity.’ Disability is an art. It’s an ingenious way to live."

 ~ Neil Marcus