There are many reasons that this blog will have long spaces of inactivity. Also the reason why I won’t be writing any Great American novels any time soon. I’ve had to reset my priorities.
#1 is my own personal health and medical issues. Since my stroke back in November 2008 whenever I get annual leave time off I use a portion of it to go to see my various doctors for a myriad of ailments. Unlike others who take vacations and actually go away somewhere that is no longer possible for me. I take medical vacations. Due to the time restrictions of my job it is almost impossible to get doctor’s appointments because they clash with what days I can take off. You tell the doctors I’m off Fridays/Saturdays and they want to give you an appointment for a Wednesday or Thursday. Well I’m a Working Woman. I’ve got rent and bills to pay and those obligations cannot be met if I take days off from my job. Or doctors want you to go to offices far from where you live. Now due to vision problems I cannot drive. Every so often I ask a cousin who is a healthy retired man of leisure to drive me somewhere but he never does. Well If I cannot get anyone to accompany me for various medicals tests or appointments then I can’t go. Plain and simple. I have no alternatives.
Also my job requires me to work long hours. There is no getting around that. This job is what pays my rent, my bills plus feeds and clothes me. This blog does not do any of that so it is about to become a footnote in my life.
Autism Responsibilities
Budget cuts and the low pay of Direct Care workers means that I must take on more responsibility for my brother Stephen. My brother Stephen Vincent Palmer is #1 in my Life. Nothing and nobody comes before him. My Love for him overrides anything else that’s going on in my life.
If you think that the current sitting president immigration policies will not have a detrimentally affect on disabled populations well think again. Who do you think does those jobs involving feeding, bathing, toileting, cleaning, cooking and other low paid work for folks like my brother Stephen? That’s right! You guessed it!! Immigrants!! Think about all the people who care for the elderly in nursing homes, provide home care, child care, restaurant work, pick our vegetables and fruits for our dinner table…again the answer is immigrants. And all of those essential jobs are extremely low paid.
However immigrants like those of us born in America need a decent paycheck with benefits. Heck like I’ve said before I don’t make much being a Museum Security Guard. As a result I’ve gone through eviction and bankruptcy. And yes I was not only born and raised here but I am a college graduate and a U.S. Army Veteran. If things are bad for me it is even worse for those who come to this country seeking a better life. But I digress. Back to Autism and Direct Service Provider issues.
The United States government has money for war, guns, weapons, bullets, big business, the rich and wealthy but No money for our developmentally disabled population? Direct Care Workers Need to make a living wage. Rent for apartments in New York is well over $1200 a month. You cannot survive on $10 an hour and live. Housing for the working class is almost nonexistent.
Even with the coming Paid Family Leave law which will take effect Jan. 2018 I still won’t be able to take off to care for Stephen because the stipulations of the law say that I will only get a portion of my paycheck not the entire paycheck. Therefore I cannot survive on portions I need the entire amount.
Basically I’ve had to make some tough decisions. There were other factors also. I’m tired of dealing with racists, bigots, trump supporters, trolls and flamers. Race brings out folks true evil nature. I’ve seen them hide behind Bible scripture verses and Martin Luther King, Jr. quotes all well knowing that the discrimination against the disabled, the working poor, people of color especially women of color won’t ever intrude upon their lives.
But I know that I must pick my battles. Truthfully I’m getting older and I cannot do the things I used to do therefore all my priorities and energies must shift to vital areas. As for the future when I retire and I do plan to retire when I’m not spending 16 hour days at work then I can begin to think about other projects, dreams, goals and plans. Until then I must deal with my current reality.
For those of you who live in the United States and wish to take action Please call, write, email, or visit your Elected Officials to advocate for our most vulnerable populations including the elderly, Women, Veterans, children, animals, the developmentally disabled and immigrants.
Thinking about you. I know that his situation must be incredibly difficult for someone as exuberant as you sound. And I certainly think that your cousin needs to step up to the plate!
Thanks. My cousin could not give a rat’s ass about me or my health. Actually when I had the stroke in Nov. 2008 he was supposed to pick me up from the hospital instead he went off partying with his girlfriend. I managed to get myself home by myself on the subway even though I was blind in my left eye. I’ve learned many lessons about humans and #1 don’t trust people and #2 be as much self-reliant as you possibly can. Also I don’t expect people to do things for me. If they do that’s great if they don’t that’s life. Either way I know I can take care of myself.
That is an important lesson, yet a tough lesson. After those events, it would be difficult to trust again.
Yup. I stopped being stuck on stupid. I rely on God. If God moves somebody to help me that’s great. If I don’t get help then I just deal with the situation. I’m a tough individual. There is no moaning, groaning whining or crying. I rarely share my problems with anyone. It’s best to keep to yourself and keep your issues to yourself and only divulge them to a professional or a person who has the ability and willingness to help you otherwise learn to get through life’s tragedies on your own. People don’t care anyway. I learned that the hard way.
Yes…to rely on God is the best avenue to take. You are very tough and strong. I think that there are people who care. In fact, I know that there are friends that you have not met yet. I am not trying to be a hidden in a dream “Pollyanna”. When we lost our son in a car accident when he was 26, our support was unbelievable…from people we knew and from total strangers. They are still there for us and for our daughter. I understand keeping to yourself, but I do think there are trustworthy people. Really, if I lived in your area…and you asked for help to go to the doctor or whatever…I would be there right away. I am not the only person like that…really! I simply choose to try to look for the positive.
To each her/his own. Everyone looks at life differently based on their experience. Your experience becomes your truth. I made my choice and I can live with it. I don’t see my choices as negatives. I’m a realist. I’m practical/pragmatic. This world is not Disneyland. I live in the real world and that’s how I make my decisions. No Fairy tales here.
Yes, everyone has something different to bring to the table. It is admirable to be a realist…certainly the world is tough and not fair and the government is not making sound decisions. I live in the real world and see bigotry and hate and disrespect every day. Perhaps, it is not directed at me in ways that you have experienced. I am just saying that you are a good person and I think that there are people you can trust. You surely don’t have to think like me. And…I do admire you for your devotion to your brother and your dedication to giving him the love he deserves. And I too am concerned about the education etc proposals especially about any matters involving those with special needs. Anyway, we are different and we are similar and that is the way life is.
Something practical and useful that you can do that will help both Stephen and I is to contact your local and Federal elected representatives to make sure that the workers who take care of my brother get a fair wage that will stem the tide of people leaving the field. Also to allow more immigrants in the country who specialize in care for the disabled. Let me know when you contact them and what answer they give you. I called Gov. Cuomo’s office today and left a message. If there are no more direct care workers then you won’t being hearing from either Stephen or myself anymore.
So sorry to read about all your struggles
That life. Stuff happens. Thanks.
I am contacting and trying to get an answer. I had already received several messages from friends from schools where I taught. They are special education teachers.
Thanks. This is a good start.
Yes!!! I know many, many people working on this situation from my area.
Your brother and your health are the only things that matter, DeBorah. My doctor tells me that all the time. Your health is your job; everything else is secondary. Take care, DeBorah.
Thanks. And my soul is tired. However I’m still on my photography blog Roaming Urban Gypsy. It does not require as much effort and provides more satisfaction.
https://roamingurbangypsy.com/
I’ll keep you in my prayers.
Thanks Toni! I’m always glad and appreciate hearing from you. The Quotes on your blog always speak to my heart. Hugs. ❤ 🙂 😀
Fortunately I plan to keep active on my photography blog Roaming Urban Gypsy and I find taking photos not only creative but therapeutic. Photography gives me the opportunity to focus on more pleasant events.
https://roamingurbangypsy.com/
I fear that we will be seeing more and more sad posts like this one as the trumpet leads the charge to benefit only the rich while his minions don’t seem to notice – or who are cowardly or too lazy or self-involved to step up and say STOP THIS!
The government’s war on mental health has been raging for decades. With Agent Orange in charge, it is about to become a war on physical health as well – except, of course for the 1% of the population hoarding the majority of economic resources as they endeavor to tip the balance to allow them to amass still more.
Best wishes as you take on more care for your brother. I applaud your priorities as loudly as I say “shame on you” to all doctors who can’t find appointments that will allow their patients to continue to report to work without forcing them to use all their vacation time – for as long as it remains possible to do so, of course. As benefits programs become less and less comprehensive, most of America will find themselves in that camp shortly if we don’t ALL sing out in protest.
Our nation is barely recognizable to me anymore. I weep for all of us living here.
xx,
mgh
(Madelyn Griffith-Haynie – ADDandSoMuchMORE dot com)
ADD Coach Training Field founder; ADD Coaching co-founder
“It takes a village to transform a world!”
This is my next worry as my brother Stephen receives Medicaid.
https://www.disabilityscoop.com/2017/03/09/gop-plan-obamacare-medicaid-caps/23426/
It’s ALL very scary for the majority of Americams these days – though too many fail to recognize it still.
I chase hate from my heart in most arenas – but not toward those in charge who CLEARLY have no consideration for the people they have been elected to serve.
And not for cowardly and self-involved politicians who have the power to stop them and fail to use it. It’s a struggle not to wish them all sorts of ills.
I am little comforted by thoughts of an afterlife — I want THIS life to be acceptable. For all.
xx,
mgh
I feel the same. Your words echo many of my thoughts. Sure I wanna see Jesus but not right now! Some Americans are wearing blinders along with rose colored glasses. They fail to see the handwriting or the case of Agent Orange the Tweeting on the wall. Agent Orange has got to go!!
Nice photo!!!
Thank you. I’m taking a rest for Lent but I have some poetry for next month April. Take care!! However I will still be posting lots of photos on my photography blog Roaming Urban Gypsy. https://roamingurbangypsy.com/ 🙂 😀