Introduction: Today, we delve into a compelling narrative of resilience, humour, and advocacy, unveiling the life of Alex Gibbon - a non-binary comedian, trustee for Cornwall Pride and Disability Cornwall, who navigates life using non-verbal communication. Alex resides in the picturesque town of Bude, Cornwall and has become a prominent figure in the community. Despite living with Functional Neurological Disorder (FND), they've found a unique voice in comedy, a voice that resonates beyond words.
Q1: Alex, you've been non-verbal since November 2018 due to Functional Neurological Disorder (FND). Could you tell us more about how you came to be non-verbal?
A: FND is a condition where the brain, although structurally healthy, sends incorrect signals to the body. Prior to the current relapse, my episodes of being non-verbal would last a few months at a time before returning to full functionality. However, this recent episode has been ongoing for over four and a half years, making it less likely that their speech will return.
Q2: That's a considerable change. How did the initial transition to being non-verbal impact you emotionally?
A: I faced enormous emotional and physical challenges when the relapse occurred. My transition into a non-verbal lifestyle was particularly challenging. I previously worked as a singer and vocal coach. The sudden change led to a profound loss of identity, resulting in deep depression. However, through this darkness, I found the strength to persevere and even thrive.
Q3: How did the support from your friends, family, and the community contribute to your journey?
A: Alex points out that, apart from their father and close friends, there was little to no support from healthcare services after 2019, making their journey an uphill battle. Yet, the unwavering support from their personal network proved critical in their healing process.
Q4: Alex, you now have a bustling life as a comedian and trustee for two charities. How do you navigate your daily life with FND?
A: Despite the intermittent bad days due to their condition, Alex has crafted a meaningful life full of laughter and advocacy. Their role as a trustee for Disability Cornwall allows them to give back to a community that was a lifeline during their most challenging times.
Q5: How has the use of a speech device impacted your experiences, particularly as a comedian?
A: My speech app often mispronounces words and it requires constant manual corrections. Nonetheless, I have become emotionally attached to the app's voice as it now represents my own.
It's interesting to note how integral technology has become in Alex's life, allowing them to continue pursuing their passion in comedy.
Q6: What kind of support do you seek out, and what challenges have you faced in obtaining it?
A: Alex expresses the difficulties they face when needing to make phone calls. Despite the existence of relay services for people with speech or hearing impairments, many businesses are not trained to receive such calls, leading to frequent misunderstandings and even discrimination.
Q7: What do you wish to access in terms of support?
A: I hope for more societal understanding and accommodation for people who are speech impaired. I would like to advocate for a societal shift in how we perceive and communicate with disabled individuals.
Q8: Finally, Alex, what advice would you give to our readers about communicating with individuals who are non-verbal?
A: Alex urges people to communicate with disabled individuals just as they would with anyone else. They advise not to make assumptions about a person's disability, but rather open up a respectful dialogue. Remembering that disabilities are not always visible and treating each individual with respect is a message they strongly stand by.
Closing: Alex Gibbon's story serves as a powerful reminder of the human spirit's resilience, the power of humour in adversity, and the importance of treating everyone with dignity and respect. They show us that voice is not merely about the ability to speak, but the ability to communicate, engage, and make an impact - something Alex does every day, beyond the confines of spoken words.
Becoming Non Verbal Later in Life
Becoming non-verbal as an adult can be a challenging experience, both emotionally and physically. This typically means the person has lost their ability to produce spoken language, often due to a medical condition or event such as a stroke, traumatic brain injury, or a progressive neurological disorder like ALS (Amyotrophic Lateral Sclerosis) or Parkinson's disease.
When an adult becomes non-verbal, it can significantly impact their daily life and their relationships. Communication is an essential part of our interaction with the world and other people. The ability to speak allows us to express our thoughts, feelings, and needs, share our experiences, and connect with others. Losing this ability can feel isolating and frustrating.
However, it's important to remember that while an individual may lose their ability to speak, they haven't lost their ability to communicate. Non-verbal communication methods can be used, such as gestures, facial expressions, and body language. Writing or typing can also be options if the individual's physical capabilities allow. Augmentative and Alternative Communication (AAC) devices, which can range from simple picture boards to sophisticated electronic devices that generate speech, can also be used to facilitate communication.
Psychologically, becoming non-verbal as an adult can be a difficult transition. There may be feelings of frustration, sadness, or anxiety associated with not being able to verbally express oneself or fear of being misunderstood or overlooked. It may affect a person's sense of identity and independence, and might also change dynamics in personal and professional relationships.
Getting professional help during this transition can be beneficial. Speech and language therapists can provide strategies and tools to enhance communication abilities. Occupational therapists can help adapt to physical changes and maintain independence in daily tasks. Mental health professionals can provide emotional support and strategies to cope with feelings of frustration, sadness, or anxiety.
It's also important for family members, friends, and caregivers to be patient, supportive, and to take time to understand and adapt to the individual's new communication methods. People should be encouraged to express themselves in whatever ways they are able, and those around them should take care to listen attentively, encouraging interaction and participation to the greatest extent possible.
