Public Shaming Disabled People and Other Thoughts

I have a friend, who like myself, is suffering the effects of having fibromyalgia in a society that doesn't like to face the fact that there are disabled people around them who might need a helping hand. She has applied and been denied disability through Social Security multiple times and has to work in order to support her children and herself and she is getting grief from her co-workers about taking time off when she is ill.

Why is it so difficult for people to understand that when a person feels bad while at work, they are not able to function as well as the other workers. Why is it so difficult for our government agency that is supposed to be helping in these situations to step up to the plate and give these people a little help or let them collect the disability that is there for them? Are we so sure that a majority of people trying to get aid are really able to work and don't need aid, that we are willing to let people who need aid "fall through the cracks" and suffer?

When I talk to this friend, I'm reminded of my own struggle to get help. I had to reapply several times before I finally was able to get disability and then, it was the lowest amount they could award and not enough to support me. I only got awarded, my worker told me, because I had several chronic conditions that aggravated each other, or I would have never been able to get help. Even now, I am scrutinized by the agency continually to make sure I "deserve" to get disability. Every where I go, everything I do, I have to worry if someone is going to decide that I'm not "worthy" or that I'm faking my disability. Even though I know that I need to be parked close to the doors at the supermarket, I have to worry that someone will see me park and get out and walk into the store without a wheelchair or cane and will decide that I'm not disabled (they need to remain around to see me drag myself out, exhausted, after a mere grocery shopping trip to get a load of what I look like when I've used all my reserves on something so mundane). I have people who innocently ask me why I can't work at a business to support my family if I can work from home to do so. I have to patiently explain that most bosses won't allow workers to drop what they are doing and nap mid way through their shift, or spend an hour staring off into space when they should be attending to work. I get asked how I can get laundry done, do dishes, volunteer at something,etc. They feel I need to explain my movements to them. 

To the "nay sayers" I say, "Are you a medical profession that knows my history and case? Because if you aren't then why are you second guessing my doctor's advice to use a parking placard, get in a walk every day, try to stay as active as possible, and be on disability?" What do you know about me and my story that you feel I should be ashamed about what I do during my day? What gives you the right to judge someone else? Do you really think that I want this life? That I looked forward to and worked towards having an aching, sore body? That I want to be trying to live my life while sleep deprived and exhausted? Do you think people chose that? I always hear people say, "well...so and so is really just trying to get attention". REALLY?! I have plenty of talents and abilities that can get me positive attention, why would I seek negative attention?

My advice to you, pay attention to the areas of your own life that could use a little work and stop worrying about what I do. When you are around someone with a disability, attempt to use kindness to deal with that person. They can stand to hear something positive and uplifting and not be shamed about something that they often have no control over. Treat them like you, yourself, would care to be treated. Our world can use a little more positive kindness and a little less negative meanness.

That is all, go about your day...

Why I Don't Go to Church Anymore

Dear Visiting Teacher,

Please stop calling me. In order for me to listen to your message, you take minutes away from my phone that I need for doctor appointment calls and I can't afford more minutes.

Besides, I've stopped going to church and don't intend to go back. You see, I only make enough money on Social Security to pay my rent and utilities and nothing more. Yes, I do get food stamps, but they don't cover the cost of living each month. I have enough money left over after rent and utilities to pay for my bus fare for the month and half of the laundry, none for tithing, toilet paper, dish soap, cleaners, cat food, clothing, or anything extra...like lunch with my church friends, or an extra casserole for a funeral. If my food stamps don't make it to the end of the month, I eat nothing but biscuits or potatoes until the next batch of stamps arrive in my account. (I might make a copy of this to give to my doctor who suggests that I eat wild salmon a couple times a week and organic vegetables to regulate my blood sugar)

 In order to control my skin conditions, I wash my cloths by hand when the laundry money runs out so that my skin won't break out. I gave up my cable for my TV, I don't have a phone, other than the little track phone that I have to pay to put minutes on, and I get fabric and yarn from clothing that I find and friends that have been generous, otherwise I can't afford to spend on that as well. When I didn't have money to pay for milk, I bounced my checking account and was forced to sell my wedding bands to pay the fees. When a surprise fee was withdrawn for a book store account, I sold my violin to pay the bank for that oversight. I have nothing left to sell to make up for any other mistakes or emergencies that I might have happen.

So when you tell me that I need to have faith that God will step in when I pay my tithing each month, and that he will get me through, I'm not listening any more. I know better. When the Relief Society President and the Bishop tell me that I need to rely on food stamps for my needs and that I can only ask for help from the Bishop Storehouse in the case of a dire emergency, I smile indulgently and turn away, because, for some of us, getting through each month is a dire emergency. And when you tell me that I should try and convert my inactive son and my non member daughter to the church, I laugh. If it weren't for them, I would be homeless right now.

As a church member, my only help would be if I were to marry someone just for convenience sake and have them support me. I don't intend to go there.

Yes, I could kick out my daughter who works part time so that she can deal with her anxiety and OCD that she is unable to get disability for and my son who chooses to deal with his autism without being labeled as disabled and held back from accomplishing his goals that he has set, even if I was able to get past my conscience and do that, I would not make enough to continue living here and would end up homeless or in a dangerous neighborhood where the rent is lower. Right now, the only way we are making it at all is to stick together.

So, I guess you can say that I've been questioning my faith a lot lately. I don't believe that God would be able to love his children and still leave them desperate and hopeless. Would he have me pay tithing and be homeless? Because that is what I look at when I make that decision. There are no other ways to trim expenses and cut costs here. There isn't another "source" of income to be had. I have no other valuables to sell. My health doesn't allow me to miraculously start working again for income.

Do I believe in God? Yes. I believe that he knows my situation and he has given me the intelligence and resourcefulness to find a way to survive, but I don't believe that he expects what the Church expects. I don't think that he expects me to have blind faith and that he'll provide for me while I do.

Peg