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In the vast tapestry of health concerns, there exists a thread often overlooked but immensely impactful: social isolation and loneliness among adults with disabilities. While these issues have long simmered beneath the surface, the COVID-19 pandemic has turned a spotlight on their gravity, illuminating the dire need for action and support.
What exactly is social isolation, and how does it differ from loneliness? Social isolation is the objective state of being physically separated from meaningful social contact, while loneliness is the subjective feeling of being isolated, even in the presence of others. For adults with disabilities, these states are not just abstract concepts but harsh realities, exacerbated by a myriad of factors. Social relationships serve as a cornerstone of health for all individuals, but for older adults and those with disabilities, they play an even more crucial role. Access to social support and communication not only encourages proactive health behaviors but also acts as a buffer against negative health outcomes. However, when these connections are severed, the consequences can be dire. Enter the COVID-19 pandemic, a disruptor of epic proportions. As ancillary services shuttered their doors and communities retreated into isolation, the health outcomes for adults with disabilities took a nosedive. The closure of vital resources left many stranded, unable to access the support networks they so desperately needed. The toll of social isolation on the health of disabled adults is staggering. Mental health suffers, with increased risks of depression, anxiety, and other psychological ailments. Physical health deteriorates, marked by heightened blood pressure, pain, fatigue, and compromised immune systems. Cognitive function falters, paving the way for cardiovascular decline and the ominous specter of dementia. Indeed, prolonged social isolation escalates the risk of dementia by a staggering 50%, highlighting the urgency of intervention. The costs of social isolation and loneliness extend far beyond individual health outcomes, permeating the very fabric of society. In the United States alone, loneliness exacts a toll of $406 billion annually on the economy, accompanied by a hefty $6.7 billion in Medicare costs for socially isolated older adults. These figures underscore not only the economic burden but also the moral imperative to address these issues head-on. The COVID-19 pandemic laid bare the harsh realities of social isolation and loneliness, disproportionately affecting individuals with disabilities. While many experienced fleeting bouts of loneliness during lockdowns, for those already entrenched in isolation, the experience was nothing new. The pandemic underscored the stark inequities in access to social connection, leaving vulnerable populations even more marginalized. Dispelling the myth that disabled individuals prefer isolation, research reveals a stark truth: societal barriers breed isolation, leaving individuals bereft of choice. Bad experiences further compound the issue, with incidents of bullying, harassment, and microaggressions driving individuals deeper into seclusion. Yet, amid the shadows, there is hope. By fostering meaningful connections, promoting physical activity, and advocating for inclusivity, we can begin to chip away at the walls of isolation. Together, we can build a more compassionate and connected world where every individual, regardless of ability, feels valued and included. As we navigate the complexities of the post-pandemic world, let us heed the call to action. Let us reach out, lend a helping hand, and stand in solidarity with those who feel the sting of isolation. For in our collective efforts lies the power to combat social isolation and loneliness, ushering in a brighter, more inclusive future for all. Parenting is a challenging journey in itself, but when you are a parent of a child with disabilities, the challenges can be even more daunting. These parents face unique struggles that require exceptional strength and resilience. In this blog post, we will explore the daily battles and triumphs of parents who get up every morning to continue the fight for their children with disabilities.
The Morning Routine: A Different Kind of Battle For parents of children with disabilities, the day often begins with a battle before they even get out of bed. The routine of caring for a child with disabilities can be physically and emotionally demanding, especially when sleep is scarce. But these parents summon their strength, set aside their exhaustion, and rise to face the day, knowing that their child depends on them. Navigating the Healthcare System One of the ongoing challenges parents of children with disabilities face is navigating the complex healthcare system. From doctor's appointments to therapy sessions and medical procedures, these parents are constantly advocating for their child's needs. They become experts in medical jargon, insurance policies, and treatment options. Every day, they fight for their child's right to receive the best care possible. Embracing a Different Normal Parents of children with disabilities often must adapt to a different definition of "normal." They learn to celebrate small victories, like a child's first steps or a breakthrough in communication, even when those milestones come much later than expected. These parents redefine success and find joy in the little things, demonstrating an incredible capacity for resilience. The Emotional Rollercoaster The emotional toll of being a parent to a child with disabilities can be overwhelming. Feelings of grief, frustration, and guilt are common companions on this journey. But these parents get up every morning, wiping away tears, and find the strength to be a pillar of support for their child. They are warriors, fiercely protective and endlessly loving. Building a Support Network Parents of children with disabilities often find solace in connecting with others who share similar experiences. They create support networks, attend support groups, and seek guidance from experts and other parents. These connections provide them with the strength to keep going, even when the battle feels overwhelming. Advocating for Inclusion In a world that sometimes struggles to fully embrace diversity, parents of children with disabilities become advocates for inclusion. They fight for their child's right to access education, recreational activities, and social opportunities. They work tirelessly to break down barriers and promote a more inclusive society. The Power of Hope Despite the daily challenges, parents of children with disabilities are fueled by hope. They envision a future where their child can lead a fulfilling life, and they work tirelessly to make that vision a reality. Their hope is a powerful force that propels them forward, even when the battle seems insurmountable. Conclusion Being a parent of a child with disabilities is a journey filled with unique challenges, but it's also a journey marked by remarkable strength and resilience. These parents get up every morning to face the fight with unwavering determination, advocating for their child's well-being and a more inclusive world. Their love, hope, and resilience are an inspiration to us all, reminding us of the incredible power of parental love. Disabilities and equality are important aspects of social justice and human rights. Ensuring equality for individuals with disabilities involves creating an inclusive and accessible society that recognizes and accommodates their diverse needs, capabilities, and contributions. Here's an overview of key concepts related to disabilities and equality:
It is as clear in my head today as it was the day it happened. I was crossing the parking lot with one of my students. He had several seizures when he was younger and was officially labeled “disabled”. The seizures had wreaked havoc on both his mind and body, leaving him with the gait of someone who had lost use of the right side of his body. It was unusual and distinct. He didn’t need a label when you saw him walk you knew he was disabled.
Though there were too many instances in which he was ridiculed, mocked and/or discriminated against, a particular incident stays with me. While waiting for a school bus, I noticed a group of high school students making fun of this student, imitating the way he walked.. As an educator, I had seen this so often. It seemed that nothing was going to fix this, nothing was going to make those high school students understand how lucky they are. Not everyone wins the lottery of good health. Not everyone gets to take easy things for granted like walking, talking and learning. As we walked by, I wanted to stop and explain how hurtful their actions were or how there was nothing to be scared of. I wanted them to know how kindness instead of humiliation can change the world. Instead, I reported them to their teacher. There was nothing else to do. Ridicule of people who are different is a common sport in our society and happens too often. A similar situation happened in which a group of full-grown adults started laughing and pointing as we got off the short bus. And who hasn’t referenced the short bus in a joke? How often does it happen that everybody in a store stops and openly stares because one student has Down Syndrome? It is constant. It is relentless and it is sad that it has become easier for me to remember the ridicule and humiliation of every taunt more than I can remember the times someone learned to read or get a job. The thing is this kind of disregard for human life and the humiliation it breeds are pretty big emotions, ones that don’t ever go away. Moments like that burn themselves into your memory and those big negative emotions will always show up causing more pain all over again. The reality of the act of mocking another person is to belittle another and shame any difference they may have And for what purpose? For 20 years I have stood next to many wonderful people as they were stared at and ridiculed. Funny thing is they never seemed to notice. The irony was and is that by humiliating another person for having disabilities, they only showcase what and who they really are. As painful as it has been to watch, I remind myself that “I can go home and leave this behind, they can’t”. Even today I am still hoping for a society when my client’s hardships are not other people’s entertainment. I hope for a day when “just joking around” isn’t an excuse for bad behavior and a total lack of empathy. Imagine a world in which fellow humans did not mock but attempted to understand, care for, even guide, educate and employ people with disabilities? It is not an impossible dream it just not widespread enough to catch on yet. Maybe soon. Most individuals find out they have the label of disabled in school, or at least their parents do. You see until then they are just children. Just little balls of love and energy that have complete focus on navigating their world.
Once that label is applied the joy and wonder of the attention the child receives totally changes. Life is no longer about growing big and strong. Life is all about fixing. Fixing their ability to read (dyslexia), their ability to sit still and listen (ADHD), their ability to learn the lesson the first time it is taught (intellectual disability) or their ability to interact via social norms (autism). Who set the standard for that expectation??? The education system. Who benefits from everyone being on the same level academically? The education system. Who needs everyone to act and feel the same? The education system. Do you see where this is going? Why does a system get to decide that there is something wrong with someone? The schools need compliance and uniformity for success, their success. The world has changed but our education system isn’t changing with it. We have to stop teaching people there is something wrong with them because they don’t see and interact with the world the same way as everyone else. The first step to this is to quit telling (teaching) our littles that there is something wrong with them and applying a label. It starts by ditching the labels and embracing the person. This isn’t just about the school systems that is just an example. Schools are filled with compassionate and caring individuals that really want to make this world a better place. Schools are filled with people that want to teach. This is about everyone, everywhere and what their opinions and actions are teaching others. Quite simply we have got to quit teaching people that there is something wrong with them because they don’t’ think, act and see the same way we do. People are not broken but our handling of people is. This is a fixable problem. It probably takes about 1,000 miles of riding to find your stride but one thing you will learn right away is that we don’t all enjoy the same part of the ride. My youngest son taught me that when we first began riding together. I quickly realized that if he picked our route, it would be full of curves.
That man loves the curves. He will lean in so that his knee is just millimeters from the ground. The faster he can take them the better, But, oh, not me! When I see a curve approaching my mind is going a million miles an hour and without even realizing it, my bike goes slower and slower. There are so many variables to consider: Is there a car in front of me or behind? Is there water on the road? Are other cars entering the road? Are trucks coming from the opposite direction on the curve? Curves are hard for me as there are just too many things to consider. Though I love riding, curves are definitely not my happy place. With every curve comes anxiety and the second-guessing of my abilities. Oh, but when I see a straight away coming, my bike can’t go fast enough. In many ways, this is how someone with Autism or many other types of disabilities often feel. Curves are hard. Changing direction is hard, particularly when they are trying to keep up with someone who chose a route that best suited their own needs. Instead of expecting everyone to handle life’s curves and complicated directions in the same manner, we need to let them navigate in the way that best suits them. As they ride the same route, adhere to the same rules of the road, their own journey should be as enjoyable as, say, my son’s Evil Knievel renditions of a ‘road trip.’ A curve is just a transition and we all handle them differently. Struggling with change may not be the problem as much as the way we force someone to make it. It is time to quit asking others to act the way we want/expect and work with them to understand what they need to be successful in a transition. Every behavior has a reason, take a breath, step back and see if you can understand what a behavior is telling you. It is time to ask if someone wants to take the route with all the curves or the straightway. Life will be much more pleasant for everyone! Next time – Push don’t pull. I bet you wouldn’t believe me if I told you that riding a Harley is a lot like dealing with Autism? I bet you wouldn’t believe that you can learn a lot about managing the world of autism by understanding how to ride a motorcycle. For you to believe how these two seemingly different and very misunderstood worlds are alike you will have to suspend your ideas and beliefs and look at it from a different point of view. Funny how we all have a narcissistic tendency to formulate an opinion about something we have never experienced. For decades Hollywood has painted a portrait of Harley riders as gangs with no rules, no showers and someone you should always avoid. However, today more than ever that demographic just doesn’t fit. There are more female and college educated riders than ever before. As our world changes so do the stereotypes, so, what is your stereotype for autism? Because if you have met one person with autism then you have met one person with autism. They are individuals, meaning they all have individual traits and those traits must be considered when working with an individual with autism. But how is having autism and riding a Harley the same? The first thing they have in common is that you don’t know how to ride a motorcycle until you get on the motorcycle and ride. Sure, there are some things in life that prepare you, a little I guess, like riding a bicycle. Still not the same, if you fall off a bicycle chances are you won’t die, hopefully just wind up with a skinned knee. But getting on that Harley for the first time you know you don’t know exactly how to ride. It is exhilarating and terrifying all at the same time. The adrenaline is pumping and there are two voices in your head going back and forth between “I’m a total bad A-- and your gunna die”. Having a child with autism is the same, you know how to parent, but not really. Maybe you babysat in high school, read all the books and perhaps took a parenting class, but it just isn’t the same. You may be ready to parent a child but not necessarily a child with Autism. Still exhilarating (I am totally in love with this child) and terrifying (I don’t know what to do and I don’t want to mess this up) emotions. There are however some lessons we can learn from riding and apply it to teaching this very diverse and dynamic population.
Push don’t pull. Any seasoned rider will tell you that turning a motorcycle is simple push the handle bars, don’t pull. It’s not a car. I have caught myself pulling for a turn only to look around and make sure the other riders didn’t catch my rookie move. You can’t pull someone with autism, they are way too smart for that. Pulling someone along is a mentality that you know best and they should just get with the program. Life doesn’t work that way for them. The reasons someone with autism may resist your direction is always a little different, going back to the individual aspect. Pushing them gently toward a goal or action allows them to absorb the transition. Long gone are the days of “do as I say not as I do”. Children become smarter and smarter every generation and expecting them to just do because you spoke is a recipe for disaster. Let them know what is coming, what it looks like and what the expectations are (talk to them). Then give them a moment to understand and move in that direction. Another facet of a gentle push is that it allows you to make course corrections as you go. We have all experienced that moment of epic parent failure, it is okay to not know how to teach something. Mistakes are just the worlds way of making coarse corrections. Always remember EVERY behavior has a reason, it may take you a few tries to figure it all out. But it is worth the time and effort because these guys have way more potential than almost everyone gives them credit for. Think of it like getting on a motorcycle for the first time. I don’t know 100% what I’m doing but I am smart enough and passionate enough to figure it out! Next– not everyone can take a curve. |
Melissa BolerCEO/PRESIDENT |
