If there is one issue that irks me the most in regards to fragile households, it’s the constant bickering of who is worse, more sick, or the least functional. It certainly is not a commonplace conversation occurring in the average home. Most families are not faced with those comparisons at all.
However, within the community and extended family is the outside perception of who they feel is the most disabled, the illest or having the most impactful handicap. The whole idea of what is a justified disability often comes down to whether you are perceived to be at fault for it or not. And that is a major failing of our general public.
It’s one thing to visit that elderly grandparent or that Aunt who is using a walking cane. Or conversate between siblings who will take Dad to his physical therapy appointment the following week. People employed at group homes, assisted living and similar have the benefit of leaving it every day, scheduled breaks and overall a means to still care for themselves. But to be living in that affected home or be the individual in need leaves no space of relief and therefore the effects are greatly amplified.
I have come to envy households and families whom their biggest complaint is they have over obligated themselves in extracurricular activities or sports team participation. I process inward annoyance at those people who are exhausted by the end of the day from playing racket ball or attending their child’s early morning soccer game. and yet they look down at the single parent barely keeping up with their autistic, aggressive 11-year-old at the neighborhood playground.
Perhaps part of me has even at a time or two, loathed the whiney well kept home takers with a nanny, complaining that funds are too low to take that nanny on a vacation somewhere and therefore their holiday fun will be less fulfilling being burdened with independent care for her family. All I describe are real things I have experienced and more often than you would expect.
It can become quite sickening to hear entitled individuals proceed with highly priced manicured conversations, while in line at the coffee shop completely tuned out to the suffering of the person actually serving them that coffee, or even bothering to see the family right behind them holding the hand of a parent who is blind or deaf.
To be addressed by someone who considers my basic human needs as an afterthought hurts. It really is symptomatic of an increasingly polarized society where the poor are constantly blamed, the sick are dismissed as a nuisance and the mentally ill seen as nothing more than addicts that cause their own misfortune.
How sad and spiritually decrepit leaders have become here in America. I have always firmly stated, you can measure the ethical health of a nation by how the sick and poor are treated. For a nation of excess, its too bad the excess of kindness is missing.
Trump has done nothing to address that, rather incite more hatred towards those in serious trouble. His outright bragging that using hate is an effective tool should cause near riot in our streets and huge civil rights demonstrations so our Nations future can be cherished and held in anticipation of excellence in all areas.
Because we live in a society focused on self, anyone who is in need of things, they themselves can not provide, tolerance is low. It shows up in the restrictions and limits of services, funding available for the various separate diseases, housings units allowed age limits and the like.
People suffering ongoing medical fragility get force fit into categories not even reasonable nor suited to them. And honestly, that creates an unforgivable amount of financial waste. I wish I could speak to Congress on the millions upon millions of dollars being carelessly thrown about just by not fully understanding the best way to actually serve the sick. There would be little need to find how to cut a billion dollars from Medicaid if States could speak directly to the affected families. Many of the solutions lay right within us.
NC has had to sue its own Medicaid mental health provider Cardinal Innovations , (see more here)just to poorly address the waste of funds meant for the medically complex with unmet needs, while denying services because a small entitled group feels their bonus is more deserving. This same provider even after being sued and all executive fired, continues to commit fraud and place aggressive incentives for workers to find ways to deny services and delay ones that are awarded. Families like mine continue to suffer. That waste is literally a crime and absolutely unforgivable offense.
The Governments poor financial practices and unguided arbitrary qualifications, end up boiling down to a very limited amount of people deciding who they feel “needs help”, and how convenient is it for themselves to provide. That immediately forces disabled and handicap homes, and people, to compete for the same funding dollars. So it becomes a proper discussion of who is worse off, the disabled or the handicapped. Not because there is a clear answer all the time, but because our government policies and practices force it.
As a result, many needs are pitted against each other, those medically fragile in a chronic sense or those who have a one-time crisis that is facing insurmountable odds. Temporary vs permanent, long-term vs short term, survivable vs less likely to survive, and all the way down the descriptive scale.
How handicaps and disabilities, whether medical/mental or physical, need radical rephrasing to reach the most people in need. Quite literally we need to re-educate each other. We need ongoing dialogue so that simply cutting funds is not the constant go-to solution to easing funding strain. It’s foolish to think a functional solution is truly viable without including those target for the services in the discussions. We need to listen, learn and embrace what the disabled community has to say and understand medical fragility does not necessarily have a category to gain service.
This isn’t a status one wants to be in. I wake up every single day with an ill sense of ease, knowing at any moment some poorly informed person is going to make split-second decisions, based on nothing more than a textbook or policy guidebook rules, that are far from factual or relevant.
I regularly hear, “well Ms. Juers, your children are not considered critical enough”. We’ve been denied home health services because I did not have a suction unit, that was needed to clear my son’s mouth every day, and that he must also be in diapers regardless of age to be within qualifying standards. SAY WHAT?
Although he soils himself at times due to bloat and GI disease, although he has narcolepsy and regularly falls asleep eating and chocking where I dig out food from his mouth. Even though he has scoliosis and fused hips, such pain deformed joints that walking more than 4-5 mins is painful. Even though I must bathe and wipe both children, we were told: “not disabled enough”. That other children were more deserving as they show more incapacitation, even when proven it is not true and even when medical professionals write clinically based letters giving great detail in the rarity of my boys’ medical conditions. Because there is no easy category for us to fit into, the easier answer for everyone else is an automatic NO.
We must compete against other hurting families. All this without any home visits, medical verifications or other appropriate types of evaluation by the state. Too often without a wheelchair, portable breathing equipment, obvious severe physical deformity, and similar, there is a notion being disabled is not at all as bad as being handicapped. The reality that an individual with a loss of a limb may, in fact, live a much fuller, less limited life, than a home with three disabled family members who spend 10 days out of every 35 confined to a hospital bed. We do indeed need additional ways to understand our sick and needy so no one needs to be discounted.
My sister suffers from MS. A horrible disease. A really cruel one if you think on it with the more severe cases. She uses a wheelchair during the day, not because she can not walk, but that if she walks all day, her energy is so sapped, she is left vulnerable to further relapse, symptoms and basic ability to keep going. However, she is employed full time, has little other extensive medical restrictions and enjoys a full life. The family often encamp around her, what at sometimes seems like a cheering squad, even doing extensive fundraising for MS, and she gets the crown for being truly handicap by disease. There is no expectation to hurry up and get better already.
This is not her fault, it is not some conspiracy to deny my boys and I assistance, and in no way an intentional negligence by my loved ones. It is a cultural misunderstanding and an ignorance of how medical fragility creates and invisibility through isolation and homebound status. “Out-of-Sight, out of mind”, is absolutely true. It is unfair to callously charge and blame people who otherwise would rush to aid.
The one cautionary shortcoming to admonish is a lack of objective knowledge and the lack of pursuing and making it a priority to understand the facts as they relate to functionality, daily crisis, or within the control of the individuals affected.
People need to address their inward impatience and irritation that the sick and needy continue to require comprehensive assistance. There is no avoiding that those in need will create an unavoidable drain on those without such handicaps, disease, and disability. It is a fact of life and having an unacknowledged begrudging stance is harmful to all. Who knows, it could be the other way around one day.
To be clear, I do not walk around enraged, feeling wronged or spend countless hours fuming at how unfair the circumstances have become. I would be just as guilty as those failing to stretch themselves to comprehend the whole picture. There are other crises out there completely unrelated to illnesses.
Loss of jobs, or poorly paying ones, household legal issues that drain funds, divorce, domestic violence, and too many more to list. Those are critical as well and create just as many roadblocks. The one difference is having your health leaves a person more capable of finding solutions. And at times some of those conditions may be avoidable, but not always.
Some of those circumstances and events can quickly land that household or family in the same crisis I face in mine. A loss of job creates a loss of medical insurance, or a loss of residence and worse. How long would it take for a diabetic no longer having access to insulin to become deathly ill and possibly suffer episodes of shock that create heart damage or brain injury? So as you see, there really are some complications in force fitting labels.
What do you think? Deep down, how have you believed up to now? Can you look across your life and find any glimpses where, “ops, I did misjudge”. Do you disagree, and feel strongly one way or the other? The goal is to generate conversations that get all of us to the table, create a space to make a change and at the very least better understand what the disabled and handicap need. Is it really fair to say one is worse than the other? Let me know in the comments below or send your own story to firstname.lastname@example.org.
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