Helpful Hints #3 Pipe Cleaners and Satin Underpants

Pipe cleaners and Satin underpants                   

This is the third set of helpful hints for those with disabilities

I had always had trouble opening and closing plastic bags with twist ties, but now my fine finger ability has declined, so one day, I got the bright idea to use pipe cleaners instead of those really short plastic twist ties. It works great. You can find pipe cleaners in the arts and crafts section of your big CVS or art supply store, as well as, of course, where pipes and tobacco are sold.

Pipe cleaners also come in handy for cleaning the caps of my plastic bottles. You know the kind with the pop up spout. If you don’t clean those spouts, it can become black and yucky tasting. I also have my helpers boil the caps to ensure I don’t get sick, or add to my dental woes.

I have worn leggings for many years; my issue has always been they are difficult to pill up and down over cotton underpants. Recently, I realized my underpants were all worn out, so I went on a mini shopping spree and bought many different types of underpants. Among those that fit, were some satiny types of underpants. I was pleasantly surprised when I went to the bathroom one day, and it was so easy to pull my leggings down, and then it was easy to pull them back up. I wasn’t struggling to pull them up, nor was I struggling to keep my balance. So, when I wear leggings, I now wear my smooth, satiny underpants.

These are not earth-shattering hints, but every small thing that can help people be a little more independent is worth sharing. 

Tamar Mag Raine

It's the 20th Anniversary of the Americans with Disabilities Act, Our Homes, not Nursing Homes!

This Monday, marked the 20th anniversary of the ADA, which President George H. Bush signed into law. It was a hard fought battle, and it wasn't clear how long it would take to implement it into reality. It's now 2010, and our struggles to become full-fledged members of society has borne some fruit. And yet many people are still struggling with the most basic needs. Let's begin with the ones I know the best; The struggle in California to keep the in-home supportive services for the elderly, and younger people with disabilities: The IHSS budget takes less than 1.5 percent of the entire budget, and yet, Arnold Schwarzenegger has sought to cut the program from the first day he took office, long before the economic downturn. He also went after the Regional Centers which provide additional support for those with developmental disabilities like cerebral palsy, autism, Down Syndrome. These cuts would have meant that THOUSANDS would either end up in nursing homes, or being endangered in their own homes, or becoming homeless. And that does not take into account the home care workers who provide individualized support for all the people on the rolls. Last year the Governor was set to cut 90% of IHSS consumers off the rolls. That would have meant that over 300,000 care providers would lost their jobs! And that would mean they would need to apply for unemployment, if not they would have ended up becoming homeless!

Not only that, but Governor S. tried to criminalize the disabled and the elderly by requiring us to be fingerprinted and photographed by roving social workers in vans with specialty cameras being used to fight the drug war on American borders, and being used by the military in Afghanistan and Iraq. Those cameras cost $5,000 each! The total bill would be $40 million! Yes folks! The state is so broke we can't afford to pay the In-home care providers, but we can afford $40 million to "root out those wicked" consumers ripping off the system or whatever numbers his highness comes up with. You'll have to pardon the sarcasm!

Bear in mind there is no evidence at all to support the outrageous claims! After all, the consumer isn't the one getting paid! As my friend and fellow advocate, Maggie Dee noted in a recent posting, it doesn't make any sense. The social workers at each IHSS office, have a mind-boggling caseload. In the 1990s, I asked my social worker about her caseload. She told me she had over 900 consumers! I imagine it must number in the thousands now. As Maggie asked, do you really think they're going to inspect each time sheet for each consumer for matching fingerprints? Are they going to train each payroll clerk to read fingerprints? Talk about a witch hunt! 

Another issue is the lack of beds in nursing homes! IF A.S. were  to be successful, the State, is not prepared in any way to put any large numbers of people in nursing homes. Thank goodness for small truths like this.
Oh WAIT! Here's a nice kicker; A.S. gave the nursing home industry MILLIONS of dollars to build more nursing homes! When I heard this last summer, I was absolutely LIVID!  Again; he was trying to get rid of us. It's a well known fact that nursing homes cost much more per person than paying for in-home care! The Terminator does not care one bit about us. He only cares about big business. The emperor wears no clothes and he has no heart. He also has no understanding of what the Supreme court Olmstead decision is about.  We are not sick. We just need assistance, usually non-medical assistance. Nursing homes are always understaffed and do little in the way of keeping "patients" busy and happy. Why should somebody languish in a nursing home when they could and should be able to have a life with family, friends and choices like everybody else!

I honestly do not think our Governor cares about the hundred thousand he wants to cut. I say; If he really cared, if any of the politicians really cared; if they had the will, they would find a way. So far we have had to fight every step of the way to keep services.  Thankfully, the legislature has rejected the $40 Million to use those cameras, saying that they never approved photographing or fingerprinting the IHSS consumers. So far so good, but we always have to pay close attention. 

I'll tell you what I'd like to see; instead of looking at short-term goals and taking from the neediest citizens, I'd like to see a gathering of activists and people in many fields, finally coming up with long-term solutions to the many issues we face. That is what we were doing in Berkeley on that traffic strip.  For four weeks my comrades kept a presence at this encampment called Arnieville. I will be so glad when A.S. leaves office. Just seeing his name causes me to feel nausea! I imagine that Meg Whitman will be no better.

A CALL TO ACTION!

I received this in an email.  I am posting it in its entirety. This is why I have no faith in politicians of any stripe.


An Open Letter from ADAPT to the Disability Community on the 20th Anniversary
of the Signing of the Americans with Disabilities Act

Sisters and Brothers in the Disability Community:

As the 20th anniversary of the signing of the Americans with Disabilities Act
draws near, we approach the milestone with mixed emotions. Securing national
civil rights legislation, protecting the rights of people with disabilities,
was truly historic. It is important that we recognize the incredible nature
of this accomplishment and the hard work of those that made this happen, but
20 years after President George H. W. Bush signed this civil rights
legislation into law and as our community is preparing for the celebrations,
we pause in disappointment that the promise of freedom has still not reached
our sisters and brothers in nursing facilities and other institutions.

Our sisters and brothers remain locked away, unseen and unheard. For them,
the act is just words on paper. They are not given the opportunity to
exercise their civil rights under this law because they still do not have the
basic freedoms that other Americans enjoy.

As the Anniversary date draws closer, they may hear about the progress our
community has made over the past 20 years, but knowing that you are protected
against discrimination in employment means nothing when the hub of your life
is a bedroom you share with a stranger. Knowing that buildings and public
accommodations are accessible means nothing when the facility staff won't let
you leave; and even having access to lifts on buses - as dear to our hearts as
that is - means nothing when you cannot afford to go anywhere on the allowance
that is left over after the institution has taken its share of your money.

When we gather together as a community, we must remember that our sisters and
brothers in institutions will not be toasting those that authored or advocated
for the Act. They will not be celebrating independent living, either as a
movement or personal achievement, and they certainly won't share in the power
or pride of the disability community. For them, July 26th will be the same as
every other day in the institution.

Recently, ADAPT has been criticized by some of the provider-based advocates in
our community because we are publicly demanding that Speaker Pelosi sign onto
the Community Choice Act and agree to eliminate the institutional bias once
and for all. They tell us that publicly questioning "our friends" is
inappropriate. We are told we should be grateful for the efforts that have
been made so far, and that we must be patient because change takes time.

We will not apologize for our impatience. We do this because our brothers and
sisters have waited long enough for their freedom. We cannot sit by,
patiently and quietly waiting for our government to give our people the
freedom which should be our birthright.

We had great hopes for President Obama and this Congress. Many of us believed
that his promise for change included the promise of freedom. When President
Obama was taking the oath of office with his hand on Lincoln's bible, it
seemed like fate was telling us that he would free our people. When the
President and Congress took up health care reform, we were sure that they
would finally eliminate the institutional bias, and we hoped that this
historic anniversary in the disability community would be celebrated with
historic change. Unfortunately, the President and Congress did not have the
political will to make this happen. While we recognize that some gains were
made, unlike any other class of Americans, our freedom remains a state
option.

It is, indeed, true that one of the tools we are using to help people leave
institutions and move into the community is the Supreme Court's Olmstead
decision, which is based on the requirements of the ADA, and it is true that
President Obama's administration has demonstrated an unprecedented commitment
to enforcing the Olmstead decision. But such efforts are transitory. We have
seen, during the last 20 years, that new administrations have their own
priorities, and although there may now be a commitment to enforce the Olmstead
decision, the pendulum will ultimately swing back in the other direction. We
also know that the gains we may make in the courts are hard-fought, slow, and
constantly subject to attack. Even right now, as many in the disability
community commemorate the ADA's anniversary, the Attorney General in
Connecticut is coordinating legal efforts by the states to fight against some
of the recent gains we have made in court which will allow more of our people
to live in freedom. Ironically, the deadline for states to join the effort is
just one day after the anniversary, July 27th.

In America, freedom shouldn't ever be optional, but - in fact - for us it is.
While federal Medicaid rules require states to pay for institutional
placement, community-based alternatives are state options and continually
subject to elimination in state budget cuts. It is ironic that as we
celebrate a civil rights victory that is 20 years old, our freedom is becoming
even more precarious and the situation becoming more dire. States, facing
record budget shortfalls, are cutting the services that support community
living options for seniors and persons with disabilities. These budget cuts
force people into unwanted placement, stealing from them much of what is most
precious: their homes, their families and their freedom.

Some people have moved across the country to a different state to get supports
and services to live outside of the institution. There, they have been able
to share in the promise of the ADA, but many people don't know about the
services available in other states or simply might not be able to make the
journey on this modern underground railroad.

But as long as community services are only an option, those who have escaped
to freedom cannot escape the fear. No place is safe because their freedom can
easily disappear at the whim of state policy makers. They will be called upon
to help solve their state's budget crisis by sacrificing their freedom, home
and lives.

We all need to recognize that through personal circumstance or state policy
change any of us can lose our freedom. No one in our community is exempt. No
one is safe. No one in our community can afford to be comfortable, but it is
also our hope that - from this discomfort - the disability community will be
mobilized to take action and, together, we will build on a 20-year legacy to
address this injustice. Our movement isn't about the civil rights for some of
us; it is about the freedom of all of us.

We cannot wait any longer. ADAPT asks you, during this ADA 20th anniversary
celebration, to recommit your energy to ending the institutional bias during
the next Congress. The time is now to end the institutional bias and FREE OUR
PEOPLE!

Sincerely,

The ADAPT Community

NATIONAL ADAPT MAILING LIST - Adapt Community Choice Act List http://www.adapt.org

California Governor wants to terminate 116,000 jobs

The governor is holding firm on his plan to slash $750 million (that will be from 116,000 workers LOSING their JOBS,) in funding from In-Home Supportive Services, the program that helps seniors and disabled Californians stay safely at home -- and out of expensive nursing or medical institutions. Will you call your state representatives and tell them that you won't stand for such inhumane and uneconomical abuses.

Call Your Reps Now (toll-free): 1-866-699-9243

From Hoovervile To Arnievile?

For the past six days, members of the East Bay disability community have been camped out on a street divider in Berkeley. We are trying to garner support and wake people up to the ugly things going on in Sacramento. Please think hard before saying, "Well there are two million people who are unemployed in California, times are hard for everybody." I'm saying WAIT, because there have been continued cut-backs for the past decade. 

Our lives now hang in the balance, with almost NO Medi-cal services for adults! With severely disabled people who have successfully been living independently in their own homes or apartments, with the support of their in-home support service providers, do you think it's right to say, "Well, you have to go live in a nursing home?" You know it would not be right. 

The politicians also know it is not right. They have proven they do not care. The Nursing Home Industry has already benefited, our Stinking asinine governor, made a move last summer that filled me with rage. He gave them millions of dollars to make more beds available for the thousands of people that are going to undoubtedly lose their In-Home Support Services due to the cuts!!! 

This, after stating that IHSS takes so much of the budget in California. Yet he gives millions to the Nursing Home Industry. But even those millions would not come close to preparing the massive numbers of beds that would be needed. The IHSS budget is 1.5% of the entire California budget.

It has been things like this that make me despise the Governor more than any other politician in recent times. BUT let me be very clear! It isn't just this governor, it is the legislators on both sides who voted for this budget. Last summer when we demonstrated in the hallway to the governor's offices, many Democrats came to talk with us, and said, "We are behind you; keep up the good fight!" Many of those, had photo ops with the demonstrators, but all but one went and voted against us. I was so angry, that I didn't feel like our demonstrations were getting through. Yes, I also spoke while the budget committee was hearing testimony, in addition to getting arrested twice, and taking part in other protests. I had to stop protesting and gather my energy. And I have spent 5 hours on that strip in the cold wind, holding signs and waving. But I cannot gather the energy to spend the night or sit in the rain when what we are doing, doesn't seem to be getting through to the folks that can sign our lives away!

What many people refuse to think about, is that we are you; we could be your mother, father, grandmother, brother sister, aunt, uncle, or your children and friends. Disability does not discriminate! It comes to us all. I have a friend in a nursing home, the only things she can do is watch TV and listen to books on CD or tape. I hate seeing her in that place! This is a UC Berkeley Grad who for seven years volunteered at a school and helped second graders learn to read and do math. She was also a writer and performer. Does she belong in that place? No. She has a severe disability, and could not get enough support after her mother died. She lost her job and then her mom, and then lost her roommate after the roommate graduated. Her Regional Center and Supported Living agency failed her. She was sent first to live in a group home, and I'm not sure why she ended up in a nursing home, but as you might guess, it made her already severe depression much worse.  I know there are thousands of people like my friend, who COULD contribute SO MUCH to society if they had the physical support in place.

I have noticed the deafening silence on the Berkeley Disabled listserv, I think, like me, many of my comrades are depressed and terrified and that leads us to inaction, and just worrying a lot about who is going to get us out of bed in the morning, who will bathe us, dress us, cook for us, and feed us, and who will help us go to the bathroom throughout the day. How can we make plans when we are the poor? Many will have no options. 

And yet Arnold Schwarzenegger wants to treat us like criminals! He wants to spend 5 BILLION dollars on high tech cameras that are used by the military and on the U.S. borders. He could provide over 500 people on IHSS with services for a year. I DO NOT UNDERSTAND his logic. One can get a full background check on a person receiving services, or a worker for a lot less. There are places on the Internet that allows people to get as many reports as they want for $40.00 a month. But that is not the point. The point is that the governor, wants to cut 90 percent from the IHSS! Ninety percent! He wants social workers to grade our disabilities on a scale that is highly inadequate, and many, like me have mixed needs that the scale simply can't grade or take into account. Please ask your legislators to cancel this grading system! If anybody grades us, it should be qualified Occupational Therapists!

One last point and I will get off the soapbox! In-Home Supportive Services, accounts for ONLY 1.5 percent of the entire budget! Read that again! ONE point Five percent! Yet it's always been the first thing that this governor wants to cut! The poor the elderly, the disabled are seen as fat to be trimmed EVERY STINKING YEAR! I AM SICK OF IT! Please help! Stop THIS GENOCIDE! FOR IT Will BE GENOCIDE IF ALL THESE CUTS GO THROUGH! Even though the state is in dire straits, Arnold has refused to raise taxes of any kind. The wealthy are not losing medical benefits, they go on living like kings, they own four houses and four cars. THEY SHOULD PAY THEIR FAIR SHARE!!! They get so many tax breaks it makes me sick. They are not "sharing the pain". Besides, 35 million people live in this State, and it makes me wonder how many ARE Employed?

Tamar Raine

We need More Cute shoes in size 11 Wide!

The apprael and shoe market do not market to those of us with a larger bone structure. Instead I have to go to certain stores in the Bay Area, where various national stores do have clothing and shoes for women with "full figures".

What the heck? My feet don't seem that much bigger, it's just that my ankles are swollen. And I do already have certain types of shoes I can't wear. Wedge shoes for instance, My sense of balance is poor, so I can't wear wedges or stilettos, and if I ever did were those, I'd probably end up in the ER with a broken ankle. You might be curious since I am in a wheelchair, why I couldn't wear those. Because if I have to get in or out of the car, or go to the bathroom, I need to be able to make the transfer. When I tried to find a pair of good looking shoes that would be appropriate for a black-tie wedding, I could not find any locally that were even close to what I needed. It seems that once a style like wedges has been introduced in one type of shoe, the industry proceeds to make wedges in ALL of its product line.

I remember in the 70s when wedges were popular, and I begged my mother for a pair, she said "only if you can balance in them," because in those days I pretty much walked everywhere. We finally found a pair of wedge platforms where the wedge was across the entire sole.

My feet have grown as I've aged, my arches were never high, but now they've fallen. I cannot possibly be the only woman in Oakland wearing a size 11 2E! It's not like I can starve and diet my feet down to a 9 M. Real women need as much a selection in clothing and footwear as skinny girls with no curves have available!

So after two dismal days of looking locally, I took my search online. Even the stores for large ladies didn't have a lot of choices for those of us who can't wear wedges. Nevertheless, I ordered four pair from two places, hopefully at least one pair will be suitable and fit me correctly.

As far as clothing goes, it never ceases to annoy me that stores don't have much, if any selection beyond an 18-W and that if I am to find clothes that fir my larger frame, I have to find it only at certain select stores, or go online to the larger ladies catalogs. You see I am not FAT. ost of the tops at these places are too big for me, so I have to order tops from still another store. Even if I were really overweight, why shouldn't I be able to pop into a store locally and have something other than sweats and big shirts available? This is just a refusal on the part of the stores, designers and manufacturers to acknowledge that there is a whole range of sizes that they should be providing and promoting.

I have been thin most of my life, usually 130 LB and a size 12, but I was NEVER a size 9. I will NOT purchase shoes that are too small and narrow. I now weigh about 165 lb. Where are the clothes?

Stores, designers, and manufacturers should acknowledge that people who are overweight, or have larger bone structures and larger feet need and want to have the same opportunities to look cute, and beautiful as our skinnier friends!

Tamar Raine

Mother's Day

When I think about my mother, it is with conflicting emotions. I still hear her critisms in my head every day. everything. "turn your arm the other way", "pick up your feet," and the #1... "TRY TO RELAX!" "for God's sake Tamar!" Oh hell's bells! Oh shit! jezzle pizzle. For pete's sake! and on it goes......... "try harder!!" there was seldom praise.