Rewinding to something I wrote many years ago in high school.
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Interactions with Planet X
(So you want to help, but have no clue)
My fellow Teens,
You all probably know some people with disabilities. After all, it's fairly commonplace now. Words like Autism, Downs Syndrome and Cerebral Palsy abound in the news. You probably even feel sorry for them. But honestly, even a truckload of pity is not much use.
You probably are also "initially freaked out" at meeting people with disabilities. (This is a direct quote from a high school volunteer I know.) Maybe you want to help, but have no idea how and what.
Consider:- Once upon a time, we were all babies. Our life track was defined - preschool, elementary school, middle school, high school, college, job etc.
A UCSD sophomore was speaking of his college experiences to our SSE class last week. Many of his friends from Cupertino schools are with him in college, so his social circle remained somewhat homogeneous. That had greatly aided his transition from the small school setting to life on an enormous college campus. I imagine it will be the same for most of you. Most of you probably have friends you've known all your life and who will be with you in college.
Some of those babies however, ended up on a path that wandered off into the wilderness of disability. Years of therapy helped some get back onto a more typical path, especially if the right therapy was done at the right time with the right set of people who knew what to do. But there is no set formula and not everyone made a full or even partial turnaround. But biologically, the bodies kept growing and voila, they became Teens with Disabilities!
I speak not just for myself, but for all the others I've observed over the years.
The therapy years are behind most teens, parents are exhausted and most therapists are giving up. Not an attractive picture!
Many are headed into Homes and "residential facilities" after high school. Some are already in Homes. I had 3 classmates in 5th grade who came from a Home. The only time they got to go out, was if the school did outings, as the Home did not do that. All that my classmate Johnny ate at every meal, was cheese pizza - how healthy is that? Others, I know - post 18 and Indian - live at home with their parents.
A few may make it to community college or even a university. A fortunate few may even end up doing a job they like a
nd lead independent lives. But there are always additional hurdles at every step.
Expectations are not high at this point. Job training programs, at most, target low level jobs. How exciting will it be to toss burgers, especially if intellectually you are capable of so much more? Frustration rides high, and this translates into more behavioral issues. As it is, being a Teen is an emotional roller-coaster for most of you. Just add on a whole suitcase of emotional and physical struggles!
Your world will open out as you go into college and beyond, while those of individuals with disabilities, may well narrow down. More doors shut with age. Ironically after age 22, govt. assistance and programs reduce significantly - just when we need it most.
We're surrounded by adults a lot; but most are paid therapists who last just 1-2 years. There is a high turnover of people, which is very emotionally distressing. Working and assisting teens or adults is not considered a desirable profession, so one cannot expect any intelligent company either, going forward.
Quality of Life however, goes beyond just basic care. It becomes a 'Lonely Planet X.’
So what was the point of telling you these depressing scenarios?
It is said that friends influence your character? This is the area that individuals with disabilities really fall short on. It's going to be a bigger problem going forward, as more of this growing population of children with disabilities become adults.
It is less your money that is needed, and more your humanity.
And it is not just about playing board games once a month at a center. That gets real boring by the 3rd month. And irritating by the 6th month, because by then the same games start to feel like therapy. And teens (disabled or not) don't want to be subjected to preschool activities like circle-time! Oh the sheer indignity of having preschool circle-time in some of the Special Ed classrooms, years after our typical peers had stopped doing them. Are you surprised that many adults with disabilities still listen to Barney and Sesame Street?
It is about getting involved in their lives. Being involved does not mean being physically there all the time either. In today's Internet World, there are many avenues of communication - Facebook, email, text, a phone call etc...
Tell them about your own lives so that through you, they can learn and experience more. You will be surprised at the insights you get into your lives when viewed through their eyes. Most are surprisingly sensitive and intelligent despite their outward body mannerisms. A person may have cerebral palsy and be dependent on a wheelchair. They may not even be able to respond. But their minds will eagerly lap up information and conversation. Don't expect responses, especially if the person has limited communication skills - just be there. They will never cease to amaze you or surprise you.
Get to know a few individuals and continue to be in their lives. The key is to be a constant presence over many years. Don't be a therapist who moves onto another client in 1-2 years.
Check in during your school vacations, and during your college vacations. Visit if you can.
Include them in some of your physical activities. Are you or your friends in a musical performance, band, team or play? Invite them to these - you will find no better cheerleaders. Do you belong to a group of some sort – you could find ways to include them at least some of the time. What do you do with your typical friends - do you just "hang out and chill.”? You'd be amazed at how many teens with disabilities long to do this but don't have the opportunity.
Don't assume they don't know academics just because they haven't been formally taught it. Academic subjects are just a matter of perspective sometimes. In light of other challenges, it just seems a lot more straightforward. Tell them about what you do - why you find certain subjects difficult or which teacher is really lousy or good.
It’s pretty hard to abuse drugs, smoke or drink if you are disabled. So you will in fact, be keeping very good company.
Be an advocate for them and watch out for them in their lives. Friends of this disabled adult I know on Facebook, keep tabs on her online activity to watch for online predators and the like. Most individuals will outlast their parents, so friends are important in their lives. As you become an adult, there will be many such opportunities for advocacy. Dealing with bureaucracy is tough for most; imagine the disabled adult who has to face it 24x7.
Consider - Pity is condescending, while Empathy and Friendship is Humanity.
In the end, it's a win-win scenario for both. You will fulfill a real need and make a difference. Man is defined by his character, not by his wealth or his social status. You will be amazed at how these interactions will shape your life.
Bring the Forgotten People on Lonely Planet X, back to the Humane Planet Earth.
You may or may not choose to do something about this issue, or not be able to do so now. But perhaps you will later in your life. All this is Food for Thought.
