There are many tragedies that play out daily in families with disabled members. Along with the obvious and constant heartache for the plight of a loved one, there are many additional costs most people can’t imagine.
The maximum federal benefit for an individual receiving Social Security assistance will rise, this year, from $710 per month to $721. That’s it. Rent, food, transportation, entertainment, all the other things we need, toilet paper, toothpaste, cold medicine, band aids — completely unaffordable. All this I know from personal experience.
There are 65 million disabled people in America. That’s 19% of our entire population. I care for one of the 42 million severely disabled. I am one of the nearly 66 million caregivers who contributes an extra $5000 each year to the $450 billion-dollar pool of unpaid labor needed to care for disabled Americans.
The $5000 in additional costs I pay to care for my disabled daughter, Erin, is only a small token of what we have really paid. The total is hard to express. It represents much more that is lost than mere money. There are costs that we explain in terms of lost potential, lost participation, and lost relationships. Since these are all much more important than money, it’s hard to tell readers about the real losses involved with disability.
The loss of potential is perhaps the easiest to minimize. We can’t know what-ifs. I believe my daughter would have been the new light of the world had she been able to shine. She shines brightly in our home and wherever the internet takes her, but she needs lots of therapy before she will even be able to sit all day in her wheelchair. We have developed different ideas about success.
My daughter feels the sting from not being able to participate in activities with her friends, her community and country. Travel is painful and the drugs many disabled people must take to tame their bodies dulls their minds and crushes their will. A family outing often becomes a painful endurance.
If it’s a good day and we can get somewhere, we are severely restricted as to where we can go. The mall, a refuge for America’s youth, is out. Shopping, in general, is out. Although there are laws making it mandatory to build ramps for wheelchair riders to get into malls, getting into the shops is another thing all together. If you have ever shopped at a mall, you understand.
It’s not just shopping. Ball games are out. Concerts — out. Plays — out. Musicals — out. There are areas for wheelchairs in each of these venues, but the competition for those seats is fierce. There are so many places we can’t get into that we don’t see America as inclusive. America is barriers.
Some math will help: There are 92,542 seats in California’s Rose Bowl stadium; 380 of those seats are reserved for people in wheelchairs. There are 3 million people riding wheelchairs, currently. Three million people is .9% of America’s population. The rose bowl should have .9% of their seats reserved for America’s wheelchair population. To be equal in America, my daughter should be able to leisurely pick her seat at the Rose Bowl from 900 available seats. But as I said, the Rose Bowl offers 380 wheelchair seats.
We don’t mind a little competition. It is a little weird trying to beat another wheelchair rider out of a seat, but that’s America. It usually doesn’t get that far. Before we ever find out something is happening, professional scalpers buy up all the wheelchair tickets to sell for twice, maybe three times the face value. There is profit in making those gimps compete for their seats.
An interesting note about the search for this information: The number of wheelchair seats at any given venue is, apparently, a closely guarded secret. I look things up for a living and finding out how many wheelchair seats are actually available, anywhere, is not easy. The venues will not say more than that they comply with the law. I assume if they were proud of their accessibility, they would include that in their abundant advertising. My suspicion is that their accessible seats are in line with the seats available at the Rose Bowl — the one venue where I could find any information at all about disabled seating.
All this pales when compared to the real cost of disability — relationships. It has been my experience, supported by research, that the devastation caused to relationships by the sorrow, helplessness, frustration, loneliness and physical labor created by a disability will take the strong to their knees and destroy the rest.
The mothers never recover. They believe themselves to be abominations of god and nature. There exists no love, no actions, no words that will ever sooth this pain. There is, no longer, romanticized notions about the reasons for marriage. Spousal love loses its position as the very object of our bonds. There are only remembered moments of our dreams for ourselves and each other. We aren’t ever really married again in the beautiful, free world of endless possibilities that sprang to life simply because we found each other. Those are long-ago ideas. We became co-care givers who loved each other.
The fathers are crushed. Their one job in the cosmos is to protect their families and make certain they flourish. Our children, our worshiped children, know pain and limitation because we have failed our only job, to secure their bright futures. If we are strong men this failure, mixed with our rage against god and probability, will beat us. We may still be men, whatever that means, but we will never again think we are the kind of man that matters.
Many fathers of disabled children leave the home. Every year my wife would come home from a mountain retreat for mothers of disabled children, complaining about the disproportionate number of fatherless disabled families. We might want to call them out for their cowardliness and compare them to the “real men” who stay, but we don’t. Those who stay have learned that some things are just too much to take and although we swear to all that we hold important that we will stay, we know we are just screaming our hope.
Sadly, there is more devastation surrounding disabled parents and their children — the extended family. They bring their own set of problems to the disabled. Some have no idea what to say to the parents or the child or how to say it. It is uncomfortable and soon, mercifully, they stop trying.
Some are noticeably embarrassed that their children are not disabled and they feel strange telling stories about their “healthy” kids to the parents of disabled kids. It’s sad, but we have to understand — the extended family wilts away. The end result is that we don’t get to see our relatives much, if at all. We can’t travel much and they won’t. We don’t get to hear the stories about our family, its children, their hopes, successes, failures, redemption, none of it. They don’t want to hurt us, so they abandon us.
Still, there is comedy in all of this. It’s an acquired sense of humor, but people can be funny. We call, whatever this is, the “is-it, can-it, does-it” question. These are questions about my college educated and disabled daughter, to me, in front of her. I stare at them in response. These pregnant pauses are hilarious. I stare and smile for as long as it takes for them to realize she is next to me. On my great days, they will turn to my daughter and shout their question, slowly.
If all of this is sad to the reader, I certainly understand. It is sad for me to hear any of this about another family. We share these lives and concerns and something very special.
I will try, if I may, to speak for the millions of other disabled families. I think I know them.
Most of us would do this all again and think we were cheating the devil for the chance.
We can tell you, you should have our lives, when they don’t suck. We are familiar companions with dreams, struggle, failure, perseverance, will and triumph. Regular people have to buy tickets to be near those life affirming ideas. We live them every day with our warriors. We know what greatness is. It has nothing to do with money, titles, toys or social class. Greatness lives in people who cannot walk and are not too proud to crawl.
We can also tell you, we are afraid. We are afraid for our disabled loved ones and we are afraid for ourselves. Most of all, disabled people and their families, are afraid of America.
America is scaring the hell out of the very people it should be honored to protect. We have just two viable political parties. One of them wants to eliminate social assistance programs, and if not entirely, they certainly want to make significant cut-backs. Their truly horrifying argument is this: There are slackers in the system. Slackers are bad. The one sure way to punish those slackers is to eliminate the programs entirely. There must be a better way to exact some Old Testament justice on slackers.
Our final appeal to America: We would not be as afraid if there were fewer Democrats and Republicans and more Americans. Democrats and especially the Republicans scare us. We are the sitting ducks in their hunt for power. Ignore everything you may have heard, $721 a month is just enough money to allow the weakest Americans to die, alone, by the side of the road. It might not take a village, but it takes more than $721 dollars.
By definition, legislation, and our countrymen’s attitudes, the disabled are the weakest among us. Must they also live in fear of greedy and capricious political machines? When is enough, enough? They are not slackers. They are alone. They could use some help from the real Americans.
Mark Johnson is a freelance writer living in the high desert of Southern California. He holds a bachelor’s degree in philosophy from California State University, Los Angeles. He is an advocate for disabled families and works to bring them information and resources.