Nila Buholtz: From Dance Club to Freelance Artist, Down Syndrome

Nila Buholtz, a 33-year-old dancer and actress born with Down syndrome, dreams of becoming a freelance artist, earning her own money, and performing on big stages. Her journey is marked by challenges and intense emotions, but she is determined to achieve independence.

Early Life and Education

Nila was born on August 21, 1991, in Bremen. Her mother, Daniela, was 21 at the time and, despite initial surprise, embraced Nila's diagnosis. Nila's childhood was well-documented by her grandfather, who filmed her and even started a children's circus where Nila frequently participated. She began dancing at age three and later joined a drama club at school, where she discovered her love for the stage.

Nila attended school for 12 years, completing 10th grade, followed by two years of vocational school. Traditionally, most German school graduates with Down syndrome transition to sheltered workshops. However, Nila, with the support of her mother and stepfather Lars, refused this path, finding it "boring." Her parents also recognized that the typical workshop wage of €150 per hour was insufficient, leading them to decline signing the necessary forms.

Pursuing a Career in the Arts

In May 2024, Nila, now 33, continues to pursue her artistic ambitions. She recently starred in "Klo to Darkness," a short film addressing the dangers of far-right ideologies. This volunteer project, while unpaid, was important to Nila and her family due to its relevant social message. Daniela often accompanies Nila, assisting with logistics and providing emotional support.

As a teenager, Nila's passion for dance and acting was nurtured by her parents. After rejecting the sheltered workshop, she sought a "real job." Initial attempts at working in service and cleaning roles, such as in a daycare center or cafe, proved unsatisfying due to the fast-paced work culture that didn't accommodate her needs. This led her family to conclude that Nila should focus on what she excelled at: dance.

At 21, Nila secured a permanent position as a performer with a dance club where she had previously danced for fun. This marked the beginning of her professional dance career, leading to national and international performances and TV roles.

Embracing Self-Employment

Nila lives in an inclusive shared apartment in Bremen with roommates who provide daily support. After five years of living independently, she decided to take a significant step: leaving her permanent job to become a self-employed artist. This was a bold move, as few artists with Down syndrome venture into freelancing.

Her first step was to seek professional advice at House Bremen, a resource center for aspiring entrepreneurs. With a well-received business plan, Nila secured funding from the integration office, embarking on a new chapter of freedom and challenges.

However, self-employment also brought setbacks. Two years into her freelance career, Nila, with the help of her stepfather Lars, manages office work and seeks new paid assignments. Rejections, such as a theater director in Berlin declining her for a role due to lack of funding, are part of the process.

Overcoming Obstacles and Finding Success

Nila remains undeterred. She continues to work on new dance pieces, such as "Asynchronous," with her dance partner Maggali and assistant Anna Hetszet. Anna helps Nila navigate public transport and ensures her safety, especially during the 600-meter walk from the bus stop to the rehearsal rooms, which lacks crosswalks. Nila utilizes free rehearsal space at the Center for Arts, a crucial resource given the scarcity of affordable workspaces.

Lars assists Nila in applying for funding, and Nila has successfully secured an important cultural grant using her unique video application method. Despite these successes, the financial pressure of self-employment, particularly the need to pay work assistants, is constant. Lars highlights that if Nila doesn't earn enough, the government might withdraw assistant funding, forcing her to rely on welfare.

To address this, Nila plans to establish her own company, which would allow her to apply for higher grants and funding. This complex endeavor involves legal consultations and bureaucratic hurdles, but if successful, Nila would be a co-founder with a say in all decisions.

Nila's dedication to her craft is evident in her self-tape auditions, which require significant effort despite rarely leading to roles. She believes her pronunciation is a factor.

Her persistence paid off when she landed a major role in a play at Berlin's Theater Unterm Dach. She plays Oilia, a character with Down syndrome, in a production set during the Nazi era, addressing the historical persecution of people with disabilities. This challenging role, with 24 performances, is Nila's first real speaking role. To assist with memorizing lines, a fellow actress uses an ear prompter, and the theater crew has adapted the script for Nila. Director Davidida praises Nila's directness and emotional honesty during rehearsals.

Facing New Health Challenges

Amidst her artistic successes, Nila faced a new personal challenge: a diagnosis of type 1 diabetes. This forced her to move back in with her parents, as her shared apartment could not provide the 24/7 care she needed. This period was emotionally difficult, as Nila felt her hard-earned independence was put on hold.

Despite the diagnosis, Nila's drive to live independently remained strong. She needed a diabetes care assistant to return to her shared apartment, but finding support proved difficult due to a lack of experience and funding from health insurance companies, welfare offices, and home care agencies.

Further setbacks came when her dance theater pieces were rejected by inclusion festivals, despite other inclusive groups being accepted. Lars believes this highlights an unfair competition and a pay gap in the theater world, where artists with disabilities are often underpaid compared to their non-disabled counterparts.

A Role Model for Others

Undeterred, Nila accepted an invitation to lead a theater workshop in Sarajevo, Bosnia and Herzegovina. Despite her new illness and the language barrier, she was determined to encourage others. Her mother, Daniela, closely monitored her diabetes, ensuring she took her insulin shots. Nila's assistant, Yui, and an interpreter helped facilitate the workshop.

Amila Tetsime, the workshop leader, sees Nila as an inspiring role model, demonstrating that "everything is possible" and that one can be successful in pursuing their passions. In Bosnia, artists with disabilities often lack the opportunities for independent living and earning that Nila has in Germany.

Upon returning home, Nila focused on regaining her independence. She found two support workers, including her old roommate Yan, to help manage her diabetes in her shared apartment. Yan, despite having no prior experience with diabetes, agreed to sleep in the next room and be available for Nila. Nila uses a sensor to monitor her blood sugar, and her phone alerts her to any issues, with the goal of eventually managing it independently.

After some negotiation, the social welfare office agreed to provide Nila with a diabetes assistant, allowing her to move back into her shared apartment permanently. Nila's journey is defined by her resilience, her ability to overcome conventional expectations, and her unwavering pursuit of her dreams. She is a pioneer and a role model, inspiring others to embrace new experiences and fight for their independence.