The role of a community in supporting people with hidden disabilities to flourish

The role of a community in supporting people with hidden disabilities to flourish

It's easy to feel isolated, different, alone and excluded when dealing with a disbaility that impacts you 24/7. While some disabilities are visible because they are obvious, there are a vast number of hidden or invisible conditions that affect people's daily lives just as significantly. Many people choose to keep their hidden disability a secret, often not realising the toll that decision can take until things start spiralling out of control. In this article, Wayne Stickel, a wellbeing and effectiveness coach who specialises in empowering people living with disability, shares why, in his experience, when we stop hiding our disability and seek support from the people around us, it can make a profound difference.

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Feb 19, 2023

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6 mins read

The fact is, Many disabilities are hidden. You could be working on a project with a work colleague or leading a team while being oblivious to the fact that one or more of those people might be dealing with a hidden disability they have not disclosed. To those with a disability, my message is don’t keep it hidden. As someone who lives with a disability that is not always evident at face value, I can assure you that, based on my own experience, hiding your disability from others can add far more dysfunction to your life. To those who want to support others with a disability, know that encouraging them to reach out and build a community around them that they can trust can mean the world. That way, instead of hiding their disability, individuals can get support from that community to have them flourish. 

The cost of keeping your disability a secret and hiding the real you

For most of my life, I was unwilling to call myself disabled. To me, having a hidden or invisible disability meant keeping it hidden from others. Consequently, I often felt I had to make excuses or lie to keep my secret hidden. The cost was a loss of self-esteem and a  self-medicating habit to ease the pain of being so inauthentic. In this article, I explore how keeping a disability hidden from others leads to dysfunction and how we can make an immense difference in our own quality of life by reaching out to and getting support from our community.

I am someone who is living with a serious medical condition that I was born with. In this journey, I have also struggled with alcohol and substance abuse, divorce, a career-ending redundancy, humiliating experiences, and more. You may or may not relate to my life experiences, however, I would suggest that these kinds of challenges are relevant to more people than you may think. A recent report on hidden disabilities states the following:

Globally, 1 in 7 of us live with a disability. And of those, 80% are invisible. That is 1 billion people who are living with a non-visible disability.

While some of us experience a disability that is visible, many of us have a non-visible impairment or condition. These non-visible disabilities (also known as invisible or hidden disabilities) are not immediately obvious. They can be physical, mental or neurological and include, but are not limited to, autism and ADHD, cognitive impairments such as learning difficulties and dementia, as well as mental health conditions and speech, visual impairments or hearing loss. They also include respiratory and chronic conditions such as asthma, diabetes, chronic pain and sleep disorders. And often, many people experience a combination of both visible and non-visible impairments and conditions.” 

If you live with a medical condition that impacts your daily life, then you may be classified as having a disability. For me, this identification of self as someone who is different has been the source of many of the challenges I have experienced in my life. Some of the things I have told myself or heard from others include:

  • I’m cursed,

  • It’s so unfair,

  • I don't fit in, 

  • I’ll never achieve my dreams, so I best keep them as dreams,

  • Others see me differently and judge me because I have a disability,

  • No one gets me or what it's like to live with this condition

The predictable outcome when we hold onto perspectives like these is loneliness, isolation and resentment. We risk ending up stuck in an unhealthy relationship with ourselves, whereby we neither value who we are nor provide the opportunity to choose to live a great life regardless of our circumstances.

I eventually discovered that our relationship with our circumstances is the primary source of our suffering, not the circumstances themselves. The good news is our relationship with anything can be transformed. Over the last two years, I have run several group programs for people impacted by various mental and physical health conditions aimed at transforming their relationship with their circumstances. These programs have made a profound difference in the lives of participants.

Spectrum of ability

I believe we are all on a spectrum of ability. Why? Because no one is perfect. Once you acknowledge that no one is perfect and we are all ‘disabled’ in some way, then you might find that instead of comparing yourself to others, you start valuing each person's uniqueness, including your own. From this perspective, we are each a different piece of glass in a stained glass window; we need all the colours to reveal the beauty in all its glory. This is one way to develop a healthier relationship with your disability or, to put it another way, your place on the spectrum of ability.

Abled or disabled, we all need each other

As a coach, many clients I work with experience a medical condition characterised by a disability. Like me, they are capable of many things. What seems most important and impactful for my clients is the experience of being understood and cared for by at least one empathetic other. 

One client, let's call him John, recently shared his experience of his search for an empathetic other. John has severe autism and is unable to interact in the most simple of social interactions. His disability has led to further issues such as anxiety, depression and later alcoholism. 

In coming to terms with his life, John started attending Alcoholics Anonymous, and it was there that he discovered his empathetic others. For the first time, he felt understood, gotten and in kindred company. Instantly, he felt comfortable with his peers and was able to socialise. It was a significant turning point in his life. He realised he was capable of being social and being with other people, and this realisation generated more confidence within him in his everyday life. Being part of a community that saw him for who he was allowed him to be himself and move forward. He became unstuck.

Transforming our relationship with our disability and choosing not to hide it opens up a host of new possibilities. Whether or not we are suffering the impacts of a medical condition, ‘no one is an island’, as the saying goes. We all need each other. Finding and belonging to a community that we feel we can belong to is critical for getting the support we need to fulfil our goals and vision.

Developing communities that encourage emotional wellbeing

In my experience, the simple things that are often right in front of us can have the most significant impact. For example, spending time with others with shared experiences in a curated community offers enormous relief to the overwhelming thoughts and feelings we all experience from time to time. For some, those thoughts can be so consuming they can lead to anxiety, depression and a deep resignation that things will never change. The simple act of being with others that get you is often all it takes to start the healing process and the journey towards accepting yourself.

I lead an organisation called Mighty Ability, which facilitates a number community-building and empowering programs for people living with disability, visible or hidden. Examples include:

  • Living a fulfilled life,

  • Meditation for relationships,

  • Men’s health webinars, and

  • Self-aware self-care and the courage to care enough to be the real you.

One recent client stated, “Before I worked with Wayne, my head was a whirlwind of unregulated thoughts. During my time with him, I learned to be more self-aware and control the direction of my thoughts in order to live in a happier, more free way.” 

At the heart of what I do is an acknowledgement that we are all gifted in different ways. Owning and being responsible as best we can for these gifts is the access to a fulfilled life. When you can allow things to be the way they are and accept the reality of your circumstances with the support of the community around you, it opens up new possibilities in your relationships and life. If it will support you, I invite you to reach out and learn about the community I run to enhance our relationship with our unique abilities.

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