Think before you speak


 

https://faithtoraisenate.com/12-things-not-to-say-to-a-parent-of-a-child-with-special-needs-part-1/

https://faithtoraisenate.com/12-things-not-say-parent-child-special-needs-part-2

Ms. Charlene Bullard writes a blog called Faith to Raise Nate. We have been discussing inappropriate comments made by people in regards to our family members with special needs. Charlene’s son Nate is deaf/blind with Autism and of course most of you have met my brother Stephen. The catalyst for her posts was my comment to her about people asking me if my brother Stephen is like the character in the Rain Man movie.  Please go to the above links for more information. The objective of Charlene’s posts is to educate people to not make assumptions about folks with special needs.

Disabled does not mean that person is living a half-life or needs or wants your pity. 

 

Below is my comment to Charlene regarding Part Two of the Topic with some edits I made for this post.

This post is on point!! Excellent words of wisdom. As I read your advice I thought of Helen Keller who was deaf/blind and went on to live an extraordinary life.

In my experience I can understand when children ask questions because they are truly curious and want to understand. As for adults they are just plain rude and choose to be that way.

I recall an incident years ago in the museum galleries when a dwarf lady was viewing a painting and a little girl saw her. The little girl knew that the dwarf woman was not a child but obviously she was puzzled as to why and how an adult could be that short. So naturally she went over to the dwarf lady and just stared at her. You know when eyes are on you. So the dwarf woman turned around and at that point the little girl ran off. The Dwarf woman just smiled. She probably goes through this every day.

Seeing that reminded me of when I was 11 and my Dad and Aunt took us on a family vacation on Montreal, Canada back in 1970. During our vacation we met a dwarf woman who was giving tours of her parents house. Her parents were both dwarfs and the house was built to scale meaning everything was lowered to their level. Having never seen or met a dwarf before I desperately wanted to ask her why she was so short however my Dad gave me that look. The look that silently said “You’d better not say anything to embarrass me or be rude. I held my tongue. Just like back in those days dwarfs were called midgets which is a derogatory term. Later on as an adult I learned that most dwarfs or Little People have a condition called Hypochondroplasia a form of short-limbed dwarfism.

On the tour I did learn that the dwarf lady was married to a normal sized man. As for their children I never found out that information but I was taught as a child not to make fun of people and not to ask rude questions that are none of your business in the first place.  After all growing up I did not like it when the other kids in the neighborhood made fun of my brother Stephen.

Several years ago the Little People of America had a convention in New York City. Museums were on their itinerary and I saw many Little People enjoying the artwork at my museum workplace.

 

http://www.lpaonline.org/

Below is a photo taken by my Dad after our tour. You can see me, Stephen, our Aunt Helen and our gracious host.

1970MontCanada

 

 

Share Your World – April 17, 2017


 

Share Your World – April 17, 2017

Share Your World – April 17, 2017

share-your-world-syw

When writing by hand do you prefer to use a pencil or pen?

Probably pencil since it has an eraser but due to past carpal tunnel syndrome and arthritis my handwriting is illegible. My handwriting could be the but of those doctor handwriting jokes. Back when doctors used to write paper prescriptions. In New York doctors usually no longer write paper prescriptions as per a New York State Law requiring all prescriptions to be submitted directly to the patients pharmacy via computer.

Would you rather be an amazing dancer or an amazing singer?

Dancer. I admire the Nicholas Brothers, Gregory Hines and Savion Glover.

 

 

 

 

 

 

If you were on a debate team, what subject would you relish debating?

That’s a difficult question to answer. I used to be good at public speaking because it was a requirement of my previous job. Now you could not get me up on a podium unless you paid me $1 Million dollars. Nerves, anxiety and panic attacks would have me running off the stage, then again that would make a good topic, “Why I suck at public speaking.”

The only other subject I could discuss without appearing to be a complete idiot or fool would be on the subject of Autism, my relationship with my brother Stephen and Why Adult Siblings of Autistic Adults Matter.  Autism programs, services and organizations only cater to parents and once the parents are deceased and the individual with Autism is an Adult you are forgotten as well as the needs of Adult Siblings which are not addressed.  There is a serious Lack of Support Services for Adult Siblings trying to take of their developmentally disabled siblings.  My Life is a constant Struggle.

What are you a “natural” at doing?

Writing and photography.

Optional Bonus question:  What are you grateful for from last week, and what are you looking forward to in the week coming up? 

Warm weather. Looking forward to my vacation next month and summer.

 

 

 

 

 

Reduced Activity Reasons


 

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.

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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.

It may take me a long time to answer or respond to any comments so please don’t be offended. Life changes. Thank you for your continued support and encouragement.

International Women’s Day


 

Today I am Thankful for the Women taking care of my brother Stephen at his Group Home Residence and for all the Ladies and Gentlemen who are Direct Service Providers. These poor folks are seriously underpaid. Actually they would make more working at Walmart or McDonald’s!! Because of the low pay they are leaving the field in droves!  On the little money they make they cannot support themselves or their families.
 
Not everyone can take off for International Women’s Day. If you are on Facebook instead Please read my below posts regarding BFair2DirectCare. Support the Workers who care for developmentally and intellectually disabled children and adults. Because of the extremely low pay workers are leaving the field. What will I do on the day that there are no workers to care for Stephen? How will other family members cope?
If you live in New York please call, write or email Gov. Andrew Cuomo to add COLA increase to the Direct Care Providers paychecks. We who live in New York know how expensive it is to live here. I know I’m barely making ends meet and I make much more money than the staff who take care of my brother Stephen every day. Direct Care Workers/Direct Service Providers need a New York Living Wage!!

 

For those of my readers who live outside the USA now you see that America Does Not properly take care of it’s disabled population. Nor do they care for the Homeless especially the mentally ill homeless many of whom are Women. Because of my work schedule I walk the streets and ride the subways late at night and early in the morning. At 1:00 am there are women and men sleeping in cardboard boxes on the streets. Both Women and men are sleeping on the subway platforms and inside the subway cars. Because of the high rents homelessness in New York is on the rise. Same problem with Homeless Veterans but I’ll leave that for another post.

America ~~ A nation that ignores the needy and feeds the greedy.

 

Fair Pay Rally for Direct Care Workers


 

 

Here is information on the Rally that Stephen and I will be attending next Friday.  Please join us if you can. Thank you!

 

NYC FAIR info@nycfair.org via mail104.atl161.mcsv.net 

8:00 AM (13 hours ago)

to me

Visit Our Website: www.nycfair.org
View this email in your browser
NYC FAIR

FAMILY ADVOCACY INFORMATION RESOURCE

MULTIPLE OPPORTUNITIES TO ADVOCATE:
NYS Senator Golden & other Legislators will be at St. Francis College On Friday, Feb. 3rd, 2017

RALLY TO SUPPORT THE WORKERS WHO SUPPORT PEOPLE WITH INTELLECTUAL & DEVELOPMENTAL DISABILITIES

DATE:  Friday, February 3rd

11 a.m. – 12 p.m. Rally

Doors open 10:30

RALLY: Urge Governor Cuomo and State Legislators

to support #bFair2DirectCare and provide funding

for the direct care workers to receive a living wage.

LOCATION: St. Francis College

182 Remsen Street, Brooklyn, NY 11201
Brooklyn Elected Officials will be speaking, as well as

other concerned parents and advocates.

*RSVP REQUIRED

Contact: abittinger@ucpnyc.org

* Upon registration, indicate need for wheelchair access.

Facebook: www.facebook.com/BFair2DirectCare

Twitter: @Fair2DirectCare

Hashtag:  #bFair2Direct Care

Subways: 2, 3, 4, 5, R to Borough Hall/Court St & A, C F, R to Jay St/Metro Tech

 

 

 

 

 

Share Your World – January 2, 2017


 

Share Your World – January 2, 2017

Share Your World – January 2, 2017

share-your-world-syw

Would you prefer to receive a unicycle, bicycle, tricycle or motorcycle?

None of the above. As my vision is 20/100 I cannot operate any type of motor vehicle even bikes!! Me riding a bike would be the equivalent of Mr. Magoo driving a car which is another activity I had to give up.

MR-MAGOO-CAR-COLOR-CROP
Mr. Magoo

What is one thing you’d like to accomplish this year?

The most important thing is for me to find an apartment around or before Oct. 1st, 2017. It is not a question of like. Safe, clean housing that is near transportation is a necessity not something I can do without.

What was one of the highlights of 2016 for you?

Being a part of the Paid Family Leave Movement for the State of New York!! I received a personal invitation from Gov. Andrew Cuomo to attend the rally! Paid Family Leave will become active Jan. 2018!!  Gov. Cuomo read the New York Times article about my difficulties being a low wage worker and trying to get time off the care for my brother Stephen who has Autism.  Please click on the second link to get the link for the New York Times article. Again Praise God my workplace situation has improved so some of the issues I faced then are no longer a problem.

I Thank God that Stephen and I Live in a Democrat, Liberal, Progressive state like New York where the Mayor and the Gov. do their best to protect their citizens, provide New Yorkers with benefits that the rest of the country does not have and is a safer space for minorities and immigrants!! New York is and will continue to be a Sanctuary fighting against all Trump policies!! Trump is against Americans who have disabilities.  I am Proud to be a Member of the Resistance!! Yes to Basic Human Rights!!

https://dancingpalmtrees.com/2016/01/31/7-deborah-and-a-better-balance/

https://dancingpalmtrees.com/2016/01/29/getting-our-blessing/

 

Stephen and I continue to be Mighty Warriors and Autism Activist/Advocates!

 

 

Would you prefer to fly a kite or fly in a hot air balloon?

I’d take flying the kite as I have a Fear of Heights!! I had enough of helicopters and planes!

Optional Bonus question:  What are you grateful for from last week, and what are you looking forward to in the week coming up? 

Glad the holidays are over and behind me. I can now return to some sort of normal life. No special plans for either this week or next week. January tends to be a bad weather month so other than going to work I’m staying in. However lately the weather has been in the 40s and 50s which I hope lasts for the entire winter.