THE BLOG
09/25/2014 03:46 pm ET Updated Nov 25, 2014

The Ice Bucket Challenge and a Cold Dose of Reality

Now that we've spent the second half of the summer watching our Facebook news feed fill up with our "friends" doing the ALS Ice Bucket Challenge, the question of what was really accomplished comes to mind.

Clearly, the ALS Association reaped the benefits in the form of overwhelming donations -- nearly $80 million according to their website as of August 25. Of course, the Ice Bucket Challenge was also meant to raise awareness about the condition known as Lou Gehrig's disease. In fact, raising awareness was supposed to be the main point of the social media phenomenon. "The challenge involves people getting doused with buckets of ice water on video, posting that video to social media, then nominating others to do the same, all in an effort to raise ALS awareness," reads the ALS Association website.

From the countless videos I watched of people taking the challenge, I saw exactly one in which the participants (kids) shouted out facts about ALS before they were drenched. Bravo to those kids and their parents. Another video from someone who actually has the disease has gone somewhat viral and is a must watch for anyone who participated in the Challenge as it truly offers some insights into living with ALS.

Of course, I didn't see every Ice Bucket Challenge video. But let's face it, the Challenge became mostly about posting one more video on Facebook of our favorite people in the world -- ourselves. It didn't hurt that dumping a bucket of ice water over the head of a friend on a hot summer day is fun and -- when they return the favor -- refreshing.

Yes, I have posted videos too, and promoted my book (ad nauseam for many, I'm sure) on Facebook and Twitter. I'll do it again if I ever publish another one.

I'm not criticizing ALS charities or anyone doing the Ice Bucket Challenge. I responded to being "challenged" with a non-video post when I took a shower after our water heater broke. As I mentioned in the post, that was as far as I go considering the effect cold has on my spasticity caused by cerebral palsy.

I also spent part of my summer raising my own awareness about my future. The question of where I will live after living with my mom no longer works for one reason or the other has always been with me. I've spent my life trying to be productive and saving my money, but the options I've found so far tell me I wasted my time.

Community living is a popular phrase among disability advocates in whatever we call this area of expertise of helping people make long-term living arrangements. Waivers, it seems, can help pay for everything I might need. That is, waivers can help as long as I don't mind hiding most of my money, or at the very least putting it out of my immediate reach. And by most, I mean anything more than $8,000. (See Pennsylvania Medicaid Waiver Disability Services & Waivers under "Are there income limits to receive waiver services in Pennsylvania?")

Touring one facility offering long-term living options for people with disabilities was sad, if not flat out depressing. Despite the best efforts of the staff to make it sound as cheery as possible, it seemed to be just short of spending the end of life in a hospital setting. For most people I met, "the end" was more like half of their lives or more.

I realize that for many people these facilities and waivers are quite literally a life-line. However, my heart and my churning stomach tell me there is something very wrong with this picture. Once again society seems to think people with disabilities are either living in poverty or independently wealthy enough to cover the extra expenses incurred by living with a disability. Or they just assume that everyone caught in the middle has a family that can and will take care of them.

Having actually found full-time employment for almost four years at one point in my life, and worked part-time for about five more, I have enough money saved that disqualifies me for most assistance. Yet, my assets would not even approach an amount that would let me live on my own for very long outside of a facility. Buying my next modified vehicle may eliminate most of my savings.

More than once in my life I've had disability advocates tell me that I should hide my savings, some openly inquiring about the amount of those savings as if such a question to someone they just met was perfectly reasonable. At least once the question was posed under the pretense of helping me qualify for services that person could provide. This summer I learned that there are consultants who can help me negotiate the intricacies of staying eligible for the waivers that would pay for the services I might need to live in my own home -- for example, aides who could prepare meals. I also learned that staying eligible would seem to be no problem once I started paying the exorbitant fees of the consultants.

I spent most of my adult life hearing about 70 percent unemployment among people with disabilities. A couple years ago I read that the number had jumped to more than 80 percent. I never realized the goal was 100 percent.

Sarcasm aside -- and manipulate the statistics all you want -- the less than 20 percent lucky enough to be working shouldn't be penalized. I'm not even in that percentage right now, but it seems ridiculous to me that striving against everything that number of more than 80 percent unemployment represents is a negative for so many. The logic of someone with a physical disability having assistance that society already deemed them to legitimately require taken away from them because they have managed to find what would be a less than middle-class income against odds no other group faces escapes me.

I continue to write in the hopes of building a career that would save me from the fate so many seem to want to paint for me. Excuse me if I don't want to accept the fact that my money is destined to be sucked up by the facility I end up moving into as I await death. The alternative of stuffing most of my money into a trust, even one that I'm oh-so-graciously allowed to control, so that the government will help me live in the community doesn't exactly thrill me either.

I remember asking how much it costs to live at the facility we toured. (Please excuse my feeble attempt to avoid using the word home.) I had some notion of continuing my efforts at having a writing career and living there with some semblance of independence. The answer of $14,000 a month was colder than any dousing of ice water could ever offer.

I can never fully know the desperation people with a disease like ALS must feel that a cure be found. While I daydream of one for cerebral palsy, it is not the life and death matter it can be for many in the disability community. And I absolutely do not begrudge others the attention their plight has been offered this summer.

Instead, I hope it truly is worthwhile attention that leads to more than some Facebook posts. I also hope that if the efforts to find a cure lead to enhancing and extending the lives of people who have ALS as opposed to an ultimate cure, they will find better options than I found this summer for their long-term living arrangements.