Not feeling so hot today. I'm really wishing I could trade my body in on a better model, one without all the aches and maybe a bit more muscle strength. Just enough to, say, get a drink out of the fridge, make my own snack, comb my own hair, help Mom fold the clothes. That's not too much to ask, is it?
On the plus side, looks like there's going to be semi-homemade rolls with supper.
Sunday, February 28, 2010
Friday, February 26, 2010
Yesterday's press conference
I was the only PWD to speak, and only three others actually showed up. Two news agencies attended. Two. Clearly, we (the people affected by the budget cuts) are not making enough noise. Either that, or our society just doesn't give a damn. I want to believe the former.
The Hutchinson News -- The story starts on the front page. Thankfully, the online version does not have my picture in the story.
Kansas Free Press -- Story here.
PILR's executive director asked me via email yesterday if I would consider testifying in Topeka later this session. I told her "absolutely."
The Hutchinson News -- The story starts on the front page. Thankfully, the online version does not have my picture in the story.
Kansas Free Press -- Story here.
PILR's executive director asked me via email yesterday if I would consider testifying in Topeka later this session. I told her "absolutely."
Wednesday, February 24, 2010
My prepared statement for tomorrow
Statement for Press Conference, 25 February 2010
Prairie Independent Living Resource Center
Hutchinson, Kansas
I've spent several days trying to figure out what I was going to say to you today. You've heard from the staff here at PILR about how these state budget cuts have and will affect the nuts and bolts of running this organization. You've heard from other people with disabilities about how these changes directly affect them. What can I tell you that you haven't heard already? Well, I can tell you one thing which cannot be mentioned enough.
I'm angry. Very, very angry.
Yes, I understand that our country and our state are experiencing some tough economic times. I understand that a lot of state-funded organizations and schools and such are getting less money all across the board. Isn't it interesting, though, that people with disabilities always take one of the biggest hits? We're in the 21st century. Humans are supposed to be more enlightened than they were 20, 50, 100 years ago. So why are people with disabilities still marginalized? Why are we made to feel shameful because the system has been set up to favor us being shut away in a nursing or group home? Why should we have to be dying or abused in order to get assistance with our most basic needs in our own homes? Why must our freedom be so curtailed? The system as it stands is unacceptable, and further cuts will only make everything worse -- for the people needing care, for the people receiving care, and for the people providing care.
There's a sentence that has bearing here. It's probably one of the most famous sentences in the United States. Unfortunately, because of this sentence's notoriety, I think the words are taken for granted. As I read it, please try to remember that we should hold these words as special in our hearts, because when we forget the true spirit of these words, people as individuals and as groups can be treated unfairly and without due respect, and we dishonor the legacy that our founding fathers laid down for us.
"We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness."
When the state forces us by severe budget cuts into nursing or group homes, it takes away our unalienable rights. Certainly our right to liberty, our right to come and go as we please at any time of day or night, is revoked. Our lives and our happiness are clearly not held in the same regard as people without disabilities. This cannot be allowed and still call ourselves citizens of the United States of America. Kansas, do the right thing, both in an economic sense and in a good citizen sense -- do not cut money further, make better use of your money by allowing us to receive personal attendant care in our homes. Don't marginalize us, liberate us. Let us live our lives and pursue our happiness within our communities. Do not ignore our unalienable rights.
Thank you.
Prairie Independent Living Resource Center
Hutchinson, Kansas
I've spent several days trying to figure out what I was going to say to you today. You've heard from the staff here at PILR about how these state budget cuts have and will affect the nuts and bolts of running this organization. You've heard from other people with disabilities about how these changes directly affect them. What can I tell you that you haven't heard already? Well, I can tell you one thing which cannot be mentioned enough.
I'm angry. Very, very angry.
Yes, I understand that our country and our state are experiencing some tough economic times. I understand that a lot of state-funded organizations and schools and such are getting less money all across the board. Isn't it interesting, though, that people with disabilities always take one of the biggest hits? We're in the 21st century. Humans are supposed to be more enlightened than they were 20, 50, 100 years ago. So why are people with disabilities still marginalized? Why are we made to feel shameful because the system has been set up to favor us being shut away in a nursing or group home? Why should we have to be dying or abused in order to get assistance with our most basic needs in our own homes? Why must our freedom be so curtailed? The system as it stands is unacceptable, and further cuts will only make everything worse -- for the people needing care, for the people receiving care, and for the people providing care.
There's a sentence that has bearing here. It's probably one of the most famous sentences in the United States. Unfortunately, because of this sentence's notoriety, I think the words are taken for granted. As I read it, please try to remember that we should hold these words as special in our hearts, because when we forget the true spirit of these words, people as individuals and as groups can be treated unfairly and without due respect, and we dishonor the legacy that our founding fathers laid down for us.
"We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness."
When the state forces us by severe budget cuts into nursing or group homes, it takes away our unalienable rights. Certainly our right to liberty, our right to come and go as we please at any time of day or night, is revoked. Our lives and our happiness are clearly not held in the same regard as people without disabilities. This cannot be allowed and still call ourselves citizens of the United States of America. Kansas, do the right thing, both in an economic sense and in a good citizen sense -- do not cut money further, make better use of your money by allowing us to receive personal attendant care in our homes. Don't marginalize us, liberate us. Let us live our lives and pursue our happiness within our communities. Do not ignore our unalienable rights.
Thank you.
Tuesday, February 23, 2010
I was on the news
Many independent living resource centers (ILRCs) in Kansas will be holding press conferences this coming Thursday (25 February) to coincide with a state budget hearing which may cut another $1 million from ILRC services. One of our local TV stations didn't read the date on the press release sent out last week and showed up at my ILRC yesterday. Since I'm one of the 1800 people in my state waiting for services and because my IL counselor knows I'll talk to anybody about improving life for people with disabilities, she called me to ask if I'd talk to the reporter. Mom and I quickly drove to town for the interview. Sorry my hair is a fright -- my little hoodlet is great for keeping my ears warm and mussing up my hair. Isn't Reba exceptionally photogenic?
You can see the video as it aired last night here. Unfortunately, they did not put closed captioning on this.
I'm still going to the press conference Thursday. I'm supposed to prepare a statement, but we'll see if I get called on to read it.
You can see the video as it aired last night here. Unfortunately, they did not put closed captioning on this.
I'm still going to the press conference Thursday. I'm supposed to prepare a statement, but we'll see if I get called on to read it.
Tuesday, February 16, 2010
Happy Mardi Gras!
Happy Mardi Gras, everyone!
*offers King Cake with purple, green, and gold sugar crystals on top*
*offers King Cake with purple, green, and gold sugar crystals on top*
Monday, January 4, 2010
Good thoughts, please
With the final transcript being logged this morning and my third letter of reference being uploaded moments ago, my Ford Foundation Diversity Fellowship application is officially complete. Wish me luck in getting it this time. It's for a stipend of $21,000 for living expenses so I can actually be in NO to complete my final year.
Also, if you have an extra thought/prayer to spare, would you ask that the National Science Foundation have pity on me and resubmit my grant application to the "appropriate program"? We received an email on Christmas Eve morning that my grant proposal had been thrown out because it wasn't appropriate for the Division of Environmental Biology program.
My whole dissertation is about how environmental stressors alter the development and reproduction (both biological processes) of fish. Huh?
Also, if you have an extra thought/prayer to spare, would you ask that the National Science Foundation have pity on me and resubmit my grant application to the "appropriate program"? We received an email on Christmas Eve morning that my grant proposal had been thrown out because it wasn't appropriate for the Division of Environmental Biology program.
My whole dissertation is about how environmental stressors alter the development and reproduction (both biological processes) of fish. Huh?
Friday, January 1, 2010
Looking ahead
A lot of people use this time of year to reflect on the year that has passed and try to divine what will come in the year ahead. Unless something truly crappy or truly outstanding happened, I rarely remember too much of what happened the previous year. The minutiae get all balled up until I cannot tease them loose from each other. I do not make up lists of praises and lists of rants and post them on tha Interwebz because they have meaning only to me, and I don't want to get into some heated discussion with someone who takes offense to this like or that dislike. I don't make huge, life-changing resolutions because something always happens to prevent their completion.
Every new year, what I promise to do are "little" things. I hold my head up and smile at strangers as we pass on the sidewalk or in the grocery store, even if they look at me like I sprouted a third eyeball in the middle of my forehead. I say thank you when someone helps me with something, even if s/he does it for me every day and knows I appreciate it, because very few people show gratitude for the little things. I try to do the best research I can. I explore my personal spirituality and endeavor to remain patient with those of a more rigid mindset. I make attempts at creativity in a variety of forms such as writing fiction, making soap, making mosaics, or cross-stitching. Soon I'm going to attempt to make my own portable medicine wheel. I try to read widely. I try to read something or someone previously unknown to me. I try to read as often as I can. Following the example of a friend, I will endeavor to keep a list of everything I read in 2010 -- both books for fun and research materials (the latter for my own edification) -- and I will attempt to write mini-reviews of the books in the interest of those who might want to also read something I've read.
So, in that vein, I am off to drink some tea (green tea with jasmine and passionfruit) in an attempt to soothe my sore throat, then I shall return to the further adventures of Sherlock Holmes.
I hope your year is everything you want it to be.
Thank you for being my friend and helping me grow.
Every new year, what I promise to do are "little" things. I hold my head up and smile at strangers as we pass on the sidewalk or in the grocery store, even if they look at me like I sprouted a third eyeball in the middle of my forehead. I say thank you when someone helps me with something, even if s/he does it for me every day and knows I appreciate it, because very few people show gratitude for the little things. I try to do the best research I can. I explore my personal spirituality and endeavor to remain patient with those of a more rigid mindset. I make attempts at creativity in a variety of forms such as writing fiction, making soap, making mosaics, or cross-stitching. Soon I'm going to attempt to make my own portable medicine wheel. I try to read widely. I try to read something or someone previously unknown to me. I try to read as often as I can. Following the example of a friend, I will endeavor to keep a list of everything I read in 2010 -- both books for fun and research materials (the latter for my own edification) -- and I will attempt to write mini-reviews of the books in the interest of those who might want to also read something I've read.
So, in that vein, I am off to drink some tea (green tea with jasmine and passionfruit) in an attempt to soothe my sore throat, then I shall return to the further adventures of Sherlock Holmes.
I hope your year is everything you want it to be.
Thank you for being my friend and helping me grow.
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