Being There


By Mark E. Smith

My two-year-old nephew is convinced that he’s ruler of the universe. And, I can see why he believes it: He can be in a room full of strange, jaded adults, and as if a performer on queue, he’ll utter one simple word, “Elmo,” in his tiny, toddler voice, and everyone melts over the kid like he’s the most precious being on Earth. Then, to the contrary, if he wants something, but doesn’t initially get it, he throws a public tantrum, eventually getting his way from someone who simply wants to squelch his screaming. Of course, his pint-sized ego just eats it up, thinking that he has everyone right where he wants them – catering to him, the King.

What my nephew doesn’t understand, however, is that if he’s ever to grow into a healthy child, and then a successful adult, at some point he’ll have to realize that the world’s not about him at all, that he’s a bit player who will eventually have to earn his way in the world by giving to others, or he will fail in life. See, when you’re two, you can get by thinking that the world’s all about you. However, when you’re 22, and you still think that the world’s all about you, it makes it really hard to succeed, where you flunk out of college, get fired from jobs, and lose friends because you’re a self-centered, childish jerk. Instead, as healthy adults, we must realize that success and the respect of others must be earned – namely through hard work, humility, and appreciating others – that the world isn’t about us, but is really about everyone else. And, it’s how we treat everyone else that dictates our success.

Interestingly, disability experience can prove a lot like living as a two-year-old, where the world can seem all about us as individuals – and it’s a self-defeating trap to fall into, where if we want to succeed, we must grow beyond ourselves and our disabilities.

Make no mistake, disability experience begins as a socially slippery slope, where no matter the origin of disability, it simply starts by seemingly focusing the entire world on us. If you’re born with disability, you’re immediately labeled as “special needs,” where there’s typically a hyper focus on you as a child, from home to school and beyond. Doctors, teachers, family, and even strangers in the supermarket will focus on you with an intensity that many children never experience.

Similarly, if you acquire a later-in-life injury or illness, the world immediately becomes about you, where family and friends are suddenly hyper-focused on you and your circumstance. Siblings fly in from out of town to be by your side. Parents make you their “baby” again. Your church’s congregation places you on its eternal prayer list. And, the entire town takes you to heart.

In these ways, when one with disability experiences the intrinsic hyper focus of others, it’s easy to become that two-year-old living in an all-about-me world, where being the center of attention is par for the course.

Yet, if you’re going to succeed – no matter how severe one’s disability, or how ravaging one’s illness – you need to get over yourself and your disability, period. The fact is, when we make life all about ourselves, it ultimately creates isolation, builds resentment in others, and destroys our lives. Successful relationships are a two-way street, where we must give to others just as they give to us. And, when we make our worlds all about ourselves due to disability, we create relationship dynamics that are a one-way street, never considering others, and we simply drain those around us. If we’re going to maintain healthy relationships, disability or not, we must routinely put others before ourselves.

In very fundamental terms, we should feel good when others are concerned about us and our disabilities. And, sharing our needs, thoughts, and frustrations is fine. However, we must remember that those around us – spouses, children, siblings, parents, and friends – have needs too, and it’s our obligation not to overlook them by getting hyper-focused on ourselves. As I like to say, disability, may feel at times like you’re struggling to carry a boulder on your back, but don’t forget that others are carrying boulders, as well. Let us not forget that we have the capacity to support others just as they support us, that disability doesn’t preclude our obligations to be there unconditionally for others.

You may have a disability, but at this moment, it’s not more important than your spouse’s rough day at work.

You may have a disability, but at this moment, it’s not more important than your child’s excitement over her basketball game tonight.

You may have a disability, but at this moment, it’s not more important than your best friend’s romance on the rocks.

You may have a disability, but at this moment, it’s not more important than your parent’s anniversary.

You may have a disability, but at this moment, it’s not more important than anyone around you, it’s not more important than anyone else’s struggles, successes, or needs.

Interestingly, while being self-centered pushes people away, extending yourself to others out of appreciation for their plights actually brings people closer. Isn’t that intriguing: If we put ourselves first, we end up isolated, but if we put others first, we end up surrounded by healthy relationships. Why is that?

In blunt terms, because no one ultimately likes a self-centered person – regardless of disability. You may feel like the world revolves around your disability, and your family and friends may seem to support that view – but the world doesn’t. And, if you make every day, minute, and conversation about you and your disability, you’ll see brevity – even resentment by others – occur in your relationships. Your best friend is surely concerned about your condition, but he or she also wants to discuss his or her life – that’s what healthy friends do! – and if you make your conversations all about you and your disability, you’ll see that friend drift away. This fact of the importance of maintaining two-way relationships holds true in connecting with spouses, children, parents, and siblings, as well. All-about-me two-year-olds are charming; all-about-me 40-year-olds with disabilities are offensive, and ruin relationships.

Now, some adults are simply self-centered jerks, and disability or illness merely fuels their pity parties – and there’s nothing that we can do but ignore them. However, many of us with disabilities aren’t intentionally all about ourselves, but are understandably distracted by the “boulders” that we carry – and merely reminding ourselves to change the focus from ourselves to others on a daily basis can revolutionize our relationships for the better.

While disability or illness may be a part of our lives, we must remember that others around us should come first – and it’s to everyone’s betterment, including our own. After all, disability in itself doesn’t serve us emotionally – it doesn’t uplift our spirits, offer companionship, or extend love – so placing disability before others in our lives is self-defeating. Instead, we should reach out to others, making our lives about them – take an active role in their lives, be there for their needs, focus on how we can best serve them – and, in that process, our lives flourish, where we open ourselves up to others in the most complete ways. Life is a boomerang: When we are sincerely receptive to others, they are receptive to us – it’s the two-way nature of healthy relationships at work.

What’s more, putting others before yourself and your disability or illness gives everyone a much-needed stress relief. Loved ones, friends, and caregivers can be just as hyper-focused and stressed-out over your disability or illness as you are, so shifting the focus and conversation from your situation to others’ gives everyone a break from disability – and that’s vital toward a balanced, healthy view in life. Talking only about how terrible you feel brings everyone down, so make the initiative to discuss what’s going on in others’ lives – including the positive – and it will inherently uplift everyone’s spirits.

On this discussion, some might argue that struggling with one’s own disability, or fighting for one’s own life, leaves no capacity to be there for others. However, again, such self-centered, disability-focused thinking is a cop-out. Most often, being there for others simply means placing your own circumstance aside for a moment, and simply listening to others with genuine regard. One can literally be completely paralyzed, on a respirator, in the hospital, and merely ask a spouse, child, or friend, “How was your day,” and intently listen – and that seemingly small gesture serves others to a remarkably intimate level. See, being there for others doesn’t take the ability to walk or even speak; rather, being there for others simply takes your honest interest and the willingness to listen at any given moment. If you can do more for others – socially, emotionally, or charitably – that’s great. However, simply being there, placing your own issues aside, focusing on another person’s life and interests by listening, is often the greatest gifts that we can give others – and that’s easily accomplished by anyone, regardless of disability.

Disability and illness can be complex, frustrating, and consuming. However, you owe it to yourself and others not to assume the role of a self-centered two-year-old, reminding yourself that the world’s not about you or your disability. Rather, what the world is about is shared human experience, where although our circumstances vary, we need each other’s support. Don’t allow your disability to get in the way of your connections with others due to a hyper-focus on yourself. When you’re around others, make it a point to focus on the other person – it’s that simple. Sure, it’s easy to let others know us; but, it’s especially rewarding when we make the effort to truly know them. Put others first, and your world will exponentially expand, becoming more about shared humanity, and a less about any limitations of disability.


Author: Mark E. Smith

The literary side of the WheelchairJunkie

3 thoughts on “Being There”

  1. Dear Mark,
    I don’t know how to begin to thank you for your awesome essays. My 30 year old daughter has had CP from birth, but has been independent living for the last 4 years. 6 weeks ago she was hit by a truck while trying to cross a city street where there are no sidewalks, and no crosswalks. Thanks be to God, she was not killed, but she has broken bones in her left leg and a badly bruised right leg (she was pinned between her power chair and the front bumper of the truck).
    She was hospitalized for a month and has come home with us for a 3 month rehab period .
    I came across your website while researching info on new chairs.
    I could not stop reading. I sat for two hours last night soaking-in many of your writings(including the one pertaining to wheelchair-pedestrian vs. vehicle accidents). I told her about your site this morning.
    What you have written may be primarily directed to the disabled community, but is of such tremendous value to EVERYONE. I was so moved by the truths in your words. I received advice, instruction and encouragement by what I’ve read. The past 30 years has been a continual learning experience for both of us. As a parent there is such a delicate balance between helping and doing too much. For all the love we share, there have also been times when both she and I have been exhausted, frustrated and angry (not always at the same time).
    I happen to think that ALL human beings are “disabled” in some way. Your forum provides insight for anyone who has the ability to take information to heart and put it to good use in their lives. Like the old song says,”accentuate the positive, and eliminate the negative”, that’s good advice for us all, and seems to be what you are all about. I thank you for your efforts to reach out and share yourself, your life, and your wisdom.
    May God bless you and those you love.
    Laurie Schmohl

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