Yep, there goes Jason, making up another word. I do that quite often when I can’t find a real one that fits what I’m trying to say. This one has been on my mind for a while, but events of late have brought my frustration with this to the fore…and its tough to discuss without this sounding like a bloody pathetic whine of “feel bad for me!”…but bear with me once more, and I’ll ask my sympathetic family members to hold comment on this post…this is a rant that I expect will have holes I could drive a truck through.
I’ve said before I am not offended by the term disabled. It is what I am. I don’t wear it as a label, I don’t buy into the “alternate” terms you see out there that are more politically correct. It is a reality. Over the past three years I have become disabled and, in all honesty, things are still going downhill, rather than levelling off. My friends see it, my family sees it, my wife sees it…and I just tend to try my best to ignore it and soldier on. Not always successfully. The soldiering on though, so to speak, is important to me. I need to be able to be independent. To work. To travel. To do as much as I still can, and even as my legs degrade more, to keep pushing what I can do. It keeps me sane. It keeps my love and marriage to Shannon strong. It keeps her from throttling me (ok she still sometimes wants to do that). I earn my way. I don’t need public assistance. I don’t need welfare. I am a productive member (if occasionally lazy) member of society.
I am able-disabled.
Now as I say that, please realize I don’t for one minute criticize ANYONE with a disability who isn’t able to be as independent as me. There are those who are MUCH better at this than I am, and there are those with their own unique issues where it just isn’t possible to add that “able” in the same way. One thing I have learned (and hell I may have said this before, I’ve lost track), every person’s illness, disability, crisis in their lives is unique to themselves. It is the worst thing that has happened to them and you CANNOT compare it to yourself or someone else, be it in their reactions or their situations. Everyone is unique. Everyone’s situation deserves respect for its uniqueness….this is something I’ll expand on another time perhaps before I get too far off track (once more…TOO LATE!)
All this leads up to my frustration. The world sure does make it hard for the working and independent disabled to make their lives a bit easier. Confused yet?
I help run a small business. We do ok, but we aren’t yet a grand success. Things are improving, but its the struggle of any small business and it places us squarely in that “middle-class range”. My wife is a teacher and combined, we do ok. In fact, if it wasn’t for my disabilities, we’d probably be more than ok. However, with any disability….there are costs to them. It doesn’t matter if its MS, Parkinson’s, amputations, stroke or an SCI (spinal cord injury). Life after requires a lot of changes…modifications…and they don’t come cheap. Wheelchairs, power scooters, ramps, safety rails, renos to homes for larger doors, turn radiuses in bathrooms, the list at times seems never ending. None of it comes cheaply. The moment the term accessible gets added to anything, the price goes up immensely. There are programs that can help with all of these, but over time we’ve discovered a major issue. If you are disabled and you work, and you make a decent living…you can’t qualify for just about any of these.
So what you say? If you make a decent living, you should be able to handle such things. I used to think that too. I thought we had prepared. We quickly learned that despite your best efforts you can’t be prepared completely for something like this…and as I discussed with a friend today, at times the systems seem to almost punish the disabled for actually working and being somewhat “able”. You make too much. You’re not quite disabled “enough”. No one WANTS charity…and to be clear, I have an INCREDIBLE support network in friends, family and even clients who have helped in more ways than I can list. I’ve been humbled by family who’ve helped modify entries, and friends who have literally carried me in and our of homes on their backs when my legs are at their worst. I am lucky to have it all.
Tonight, I just feel the frustration of, at times, feeling punished for being active, for being self-sufficient and for being able to LIVE. Maybe it’s not fair, maybe its whining on my part. If so, I beg the rare indulgence from those who enjoy my rantings…I don’t do it often…and hell perhaps I should do it more often. I don’t like doing it though…anymore than I like being dependent period. So forgive this whining tonight. We’ve had reason to be frustrated of late…and tonight I needed to vent. And yes, this was prompted by some news I won’t get into now…just frustrating news indeed.
More positive rantings to come!