Essay Instructions: The Virtues of Ballpark Normalcy
By Lisa Blumberg
Some people find it difficult to what is the proper attitude to have when facing children with disabilities. Many feel sorry for them. Some simply ignore it and pretend like it is not there. Others step back or stay away. Lisa Blumberg has taught me that anyone who works with children with disabilities should reflect on their own feelings regarding children with disabilities. This essay is an attempt to provide you with the opportunity to do so.
1. What does Lisa mean by “ballpark normalcy”?
2. On page 1, Lisa writes… “the first question that parents ask is “Will she have a normal life””? Do you feel you would ask a doctor the same question about your child? What would a normal life for your child be like? Could a child with disabilities have the same life? Why or why not?
3. On page 1, Lisa writes “this type of all or nothing approach may end up causing everyone’s life to be more abnormal than accepting aspects of a child’s disability would”? What does she mean by that? Do you agree with Lisa? How does it make you feel as future physical therapist that treatment may be viewed as doing more harm than good? Do you feel it would be unethical to not treat a child which you believe could minimize the consequences of a disabling condition?
4. We are all unique and different and many of us have issues that are at the edge of “ballpark normalcy”, or even out of it. How do you relate to what Lisa says about ballpark normalcy? Is there something about yourself that isn’t quite “normal”? Are you doing anything to change any of those aspects of yourself you identify as being on the edge of normal?
RESOURCE (USE ONLY THIS ONE - BELOW, PLEASE)
Published in 2004 in GUIDELINES FR0M A DIFFERENT JOURNEY: A COLLECTION OF ESSAYS FOR PARENTS OF CHILDREN WITH DISABILITIES
The Virtues of Ballpark Normalcy
By Lisa Blumberg
When a child is first labeled as having a disability ??" and somehow it is always a doctor who does the labeling, the diagnosing- the first question that parents ask is “Will she have a normal life?”
The doctor will usually answer by discussing what aspects of the child’s condition he thinks can be changed and what aspects he thinks can not be. Parents are left with the assumption that the way to achieve the normal life they want for the child is by doing everything they can to minimize the child’s disability. This will be so regardless whether the child’s disability is physical, sensory or cognitive. Parents will pursue early intervention, technology, and surgery, whatever it takes. However, this type of all or nothing approach may end up causing everyone’s life to be more abnormal than accepting aspects of a child’s disability would.
As a person born with a physical disability resulting from cerebral palsy, I wish that someone would tell parents about the virtues of ballpark normalcy. Ballpark normalcy refers to a life that is not quite normal but it is in the ballpark. This type of life is a little harder than a normal life. It is also a little better because one has the heightened perception and quirky insight that comes from being on the circumference of the mainstream.
Ballpark normalcy is about self-esteem and taking pleasure in one’s own interests, whether it be collecting magnets from exotic places, which I like to do, or reading books by Anne Tyler, which is also what I like to do. It is being an individual first and being a disabled person, perhaps fourth or seventh, depending on the situation one is in at the time.
How does this play out in practical terms? When parents allow their four year old who can hardly stand to have his birthday party at a gymnastic center because that is where he says he wants to have it, they are doing the right thing. Part participant and part observer, rolling over and over while his friends jump and leap, the birthday boy is thrilled. The parents may feel some sadness but it is just their sadness. Their son is doing what he wants to do.
Parents need to recognize that their view of disability may differ radically from their offspring’s view. For parents, disability may be an unplanned surprise (“I didn’t even know what it was”), a tragedy, touching, poignant. For the child, it may just be a given, something that is natural. The people with disabilities of my generation are vaguely guilty that our parents felt so badly about the fact we were mobility impaired or whatever. Hopefully, due to the pride engendered by the disability rights movement, this will be less of a concern for today’s children.
A rule of thumb that parents should follow is that what is good for nondisabled children will generally be good for disabled children and what is bad for nondisabled children will generally be bad for disabled children. If you believe that your ordinary children should have “down” time after school, you should try to make sure to that your disabled child also has “down” time. If you don’t think it would be productive to applaud your ordinary daughter every time she picks up a pencil or puts on her coat, don’t overwhelm your disabled daughter with praise every time she does these things. I’ll interject a personal note here ??" Excessive praise for doing something normal is not a spur to further achievement. Instead, it just makes a person feel like a freak.
If there is one thing that children with disabilities and nondisabled children have in common, it is that kids don’t always do what you want. Your hearing son may not want to play on the soccer team you helped organized. Your deaf son may sign like there’s no tomorrow but have no interest in oral speech. Neither son may want to take over the family business. These are just things that normal parents need to come to terms with.
Incidentally, the fact that kids don’t always do what you want is something doctors and other professionals may need to be reminded of. Too many of these folks don’t seem to perceive that your child may be rather like their child.
Speaking of doctors, they are useful in that they can sometimes provide you with information you need or suggest approaches or treatments that may benefit your child. Try to go to someone who enjoys and appreciate your child. Never let any professional tell you what your goals or your child’s goals should be.
Itzak Perlman, the great concert violinist, learned to play the violin as a child after becoming mobility impaired from polio. The world is lucky indeed that his parents let leg exercises play second fiddle to music lessons. While in most cases, a person’s gifts may not be so clear, always remember that the way your child can reach his or her potential may have nothing to do with minimizing his disability. A hour of blowing bubbles may do more to help your child become a happy, adjusted adult than a hour of stretching.
Pursue your own interests, too. Don’t feel you have to volunteer for every disability-related cause you hear about if that’s not your style.
I must confess though that I myself do have interests and attitudes that I might not have if I did not have a disability. This is part of ballpark normalcy. For example, I do not have children myself. However, I know the value of flexibility and innovation. This means that although I work full-time in a company that sees 8 to 5 as the norm, I’ll go to bat for any co-worker who wants to work reduced hours so as to have more time for family. Sometimes, my advocacy has made the crucial difference. This pleases me tremendously!
I am an aging baby boomer now and if there is one thing I have learned is that time goes by really fast. I know I have had some opportunities that I haven’t made very good use of but I try to remain open to new things as they come my way. What I want to say most to new parents whether your child has a disability or not is that you should seize the day! Love your child. Enjoy your child, respect your child but live the life you were meant to live. Your child if he is lucky will also live the life he or she was meant to live or at least something in the ballpark.
THANK YOU
I AM VERY APPRECIATED YOUR HELP
(this essay is very very very important to me, I had experience with your writing style before and I trust you on this one)
There are faxes for this order.
