When I moved from a major metropolitan center with several well-known multiple sclerosis (MS) treatment centers to a rural town many hours’ drive from the nearest neurologist, I had to rethink my MS healthcare.
I suppose I’m closer now to the average MS patient when it comes to the distance I have to travel for care. And with the price of fuel for the car going through the roof this past year, it brought into sharp focus how difficult times are even more difficult for people with disabilities.
High Fuel Costs Restrict Travel
The high cost of fuel is the first thing that comes to mind when I think of the economic impact of disability and MS.
The larger cars that many with MS are forced to drive — due to the need for scooter storage in the trunk or roll-aboard access for drivers who use wheelchairs, or simply because we’re unable to fold ourselves into smaller vehicles — use more fuel, so higher gas prices hit people like us harder.
Job Security May Be at Risk
When tough times and tight budgets bring managers and supervisors around the table to talk about cost cutting, layoffs and redundancies are a difficult (though sometimes necessary) topic. For those of us struggling to make it to work, those who know we’re not performing to our former levels, and those who have been brave enough to ask for accommodations in order to stay employed, these are fearful times.
Even the most loyal of employers may not be able to keep everyone on the payroll when demand dips and profits slip. And it’s not hard to imagine that anyone seen to be “less productive” is going to be one of the first let go in a downsizing.
Utilities Are Pricey but Necessary
For those having to charge electric mobility devices, today’s electricity prices can be burdensome. Although the United States is not experiencing the staggering European prices for electricity caused by the war in Ukraine, winter rates and peak-hour charges can hit those needing to plug in before they move on hard at this time of year.
Government Services Often Contract
Just as the human resources department is sometimes called upon to balance a company’s budget based on payroll, so too must a government be called upon to mind the public’s funds, sometimes by spending less of them.
We have all seen services to those in need — in our case, people living with MS — become the target for the budget ax. As many of the symptoms of our disease are transitory (meaning they come and go, sometimes for years), the services we might require can be an easy target for those looking to “tighten the belt,” “trim the fat,” or whatever euphemism they feel most comfortable using when they have to sleep at night after cutting someone’s lifeline.
Oddly, one of the services I’ve seen cut is paratransit, which the first concern — high fuel prices — may have forced us into in the first place.
Charitable Funds Are Stretched Thin
No one wants to be on the dole. The term “taking charity” is nearly as undesirable to some as the very need to do so. But the fact of the matter is that some of us need financial help to make it from one day to the next.
I’ve often said that to be a member of a society means that sometimes those who have pick up part of the check for those who have not.
When more people are put in the uncomfortable and unfamiliar place of requiring assistance, there is less to go around. Those who once gave of their time or treasure may now be strapped themselves and unable to give as much. Some who were able to make ends meet previously now find themselves looking for the same help that people with disabilities have required before them, and the means are stretched very thin.
Hard as It Is, We Need to Speak Up About Our Needs
During the recent holiday season — one of giving and of love — many may have found there wasn’t enough for the necessities, let alone the extras of the season.
Now may be the time to let those in authority know that we are in need, and we won’t be considered “budgetary extras,” for we have given of ourselves, and we are not malingerers or scoundrels of a system.
We have multiple sclerosis, and sometimes, even if we’d rather not admit it to ourselves and our family, we need help.
An economic recession can be difficult on many in our society. It may be especially difficult on those of us with MS. I’m sure I’ve missed a few ways in which a down time has made it difficult for many of us.
These difficulties can be just one more layer — one more invisible layer — of living with multiple sclerosis.
Wishing you and your family the best of health.