Category: Disability Issues

Disability Laws Serve Politicians, Not Us!

12/19/2014

Legislation designed to protect people with disabilities from discrimination, allow us to work or to gain an education actually ends up serving the politicians who are involved with it better than our community.

Why? Because the bill has to be ineffective for it to pass through congress. It has to have built in safeguards for politicians so that it will be approved, else it will quietly die in committee, if it ever makes it there.

What are the safeguards, you ask? It has to be cheap, it cannot offend the sensibilities of the opponents or those whom the politician is beholden to, and it has to be beneficial to either the middle class or the rich at the expense of the poor.

Take the ABLE Act, for example, which just passed both houses. The Achieving a Better Life Experience (ABLE) Act is a bill that was supposed to help people with disabilities, but in reality it harms us. It was intended to allow people with disabilities to save money, tax free, for future expenses for independent living. However, recent amendments to the bill has made it unacceptable because it steals services from poor people with disabilities to give to the rich and it imposes age restrictions.

Simply put, it caps eligibility by age. Only people who have acquired their disability before age 27 would be eligible. It also includes budget cuts to vital services for people with disabilities. One group of people with disabilities should not have to sacrifice such services in order for another group of people with disabilities to have what they need to survive.

If disability-related bills aren't pitting us against each other, they are protecting those special interests who don't want us around or who see us as liabilities. This is partially what happened with the Americans with Disabilities Act (ADA), to say nothing of the absurdities that gave better protections to people who aren't even disabled, than to people with certain disabilities!

Another tactic is to have the legislation on paper, but fail to implement it, or do so ineffectively or put in provisions that prevent or impede someone from seeking recourse if there are violations of the law.

Then, there are the libertarians who don't want to be told what to do, so they oppose a bill like the Community Choice Act, or it's successor, the Community Integration Act, because of the mandate on home and community-based services and supports, not realizing or caring that there is an institutional bias in long-term care because nursing homes and other institutions are mandated.

Further, they tend to put a price on our freedom and our rights. Usually, the first question out of a politician's mouth is "how much will this cost?" Look, I understand fiscal responsibility, but if your first worry is how much it will cost to assure my rights and freedom, you've spoken volumes to me without knowing it!

What makes this so infuriating is that politicians who actually care about our community know that they have no choice but to go along with that or their bill won't get through. Senator Harkin, who recently retired understood this, as did Vice-President Joe Biden, when he was in the Senate. For politicians who care only about their record looking good, this is a boon to them. They can put in weakening amendments and riders, then, say that they voted for disability rights legislation. In one fell swoop, they've satisfied their constituents, obeyed their masters and they look good on paper. Meanwhile, our community is suffering because what looked good on its face is actually hurting us.

There are many folks, even disability advocates and activists who say, "well, this is a good start." Why? Why should we settle for a good start? To me, it doesn't make sense, financially or otherwise, to work to improve a flawed bill that should never have been passed. Unfortunately, as long as politicians have to satisfy people, entities and groups that are far more powerful than the disability community, this is how it's going to be. Disability legislation has to be flawed and ineffective to be passed because it isn't really supposed to benefit us.

All I want is for all involved to be honest and upfront about this, because the act of passing ineffective legislation that is supposed to benefit people with disabilities is in itself, discriminatory. If we want this to change, we have to rise up and fight this. We have to explore creative, nonviolent ways to show those in power that though the vast majority of us are poor and unemployed, we are a force to be reckoned with. Sure, voting is very important, but it means nothing if the very culture and system on which this is based isn't dismantled and replaced with something more equitable and just. Otherwise, by accepting the "good start" rhetoric, we are complicit in our own harm.

0 Comments

I Have No Refuge

12/4/2014

1 Comment

I have come to understand that there is no self-care for me. I have no refuge from the injustice that gets worse by the day. I try to lighten the mood by posting funny pet pics and vids and acts of kindness, even if it is superficial, on social media. Still I can't get away, because I'm chastised by others who also can't get away, that I'm slipping, giving in, somehow, not being true because I'll try to snatch the tiniest bit of refuge from the pain in a kind act that shouldn't be, by someone who wouldn't afford me that kind act because of my color.

There is no hiding for me. I see, eat, hear, taste, smell injustice every waking minute. I live the struggle to keep people with disabilities from unnecessary institutionalization, to keep us from being killed, either by neglect or legislation, to ensure that we are thought of in the building of public spaces, in the Governor's budget, or in times of disaster.

I have no refuge from fear, exclusion, discrimination, othering. I cannot shut down. I cannot get away. I'm forever open to it, even in my sleep. With my waking eyes, I see the shadows of Mike, Eric, John, Ethan, Tamir, Renisha, Trayvon, Tajieme, London, and so many other men, women and children murdered by cops, vigilantes or parents who disposed of them simply because of their disabilities.

Every 28 hours, a Black man is killed by police or vigilantes and that doesn't even begin to address the Black women and children who die at the hand of amped up, racist cops and vigilantes. Each time I leave my house, I wonder will I join their ranks.

Sometimes, I get jealous, envious, angry, rage-filled that there is no refuge for me. It's not a matter of choice - I did not choose this Black, disabled lesbian body that I live in, so I cannot choose not to see or be subject to or survive the injustice, hatred and racism around me. I cannot escape it if I tried.

My White, straight, nondisabled friends can take a break for self-care - they can back away, not deal, refuse to see, hide until they feel safe enough to come back out. I'm not shaming them because they didn't choose to be who they are, either. At least, they have that to keep themselves sane. I just wish that my friends, who mean well, understand that I and others like me don't have that option.

When I hear people say, take a break, take care of yourself, do something fun, get out, I wish I could make them understand that for me, there is no break, no respite, no refuge except death, and that is permanent, and not an option - at least, not an option that I'll choose to take.

I wish that I can tell you what it feels like in my body to live this way, to always be in fear, on guard, ever vigilant, angry. There is a soul pain, a psychic pain, a spirit pain that never leaves me. There is a tense expectancy, heightened fear, awareness, waiting. There is sadness, hopelessness, a tiny kernel of bitterness and yes, a hatred for this unjust system that I can't get away from even in my sleep, even in my dreams.

I can't escape the words of hate, shame, recrimination, the taunts hurled at the memories of dead Black bodies, the hate unfurled against those who fight back against injustice with both rage and love, who have brought this to your neighborhood, your door, your face, and who inconvenienced you by blocking a street, a highway, a store, an agency, with their bodies so that you'll see in some small way, what we go through. I say we, because I am often one of the ones that you yell at, scream at, curse at, spit on, shove, hit in your rage and indignation - how DARE we put this on you!

So I try to take a second here and there to post a funny pic or vid on social media. I try to lose myself in my music, my books, my fantasies, my wife's arms, my cat's eyes, my friends' laughter, my hopes, my visions, my desire to try and pluck something good out of something problematic, even, sometimes, my writing. I try to hang on to something, even as I know the troubles linger in the background, indeed, all around me.

So, see - there is no refuge for me, no way of escaping, nowhere to hide from injustice, so I'm left to do the only thing I know to do - fight. Fight with anger. Fight with hope. Fight with love.

1 Comment

A Call From FEMA

11/8/2014

0 Comments

As many of you know, I have two major passions - disability rights advocacy and activism and emergency preparedness. I have been involved in disability advocacy for 28 years and emergency preparedness for 10 years. To me, this comes as naturally as breathing and education is the key to raising awareness in the community, which is why I have written numerous articles and blogs on disability and emergency preparedness issues and have recruited over 30 folks with disabilities to train as CERTs (Community Emergency Response Team).

Now, I am one step closer to realizing my dream of working in emergency management with an emphasis on disability. About six weeks ago, a friend and colleague who lives in Montana sent me a job announcement from FEMA, the Federal Emergency Management Agency, regarding a job with FEMA here in Denver. A couple of days later, another friend in Montana sent me that same job announcement.

Trust me, it wasn't lost on me that two friends in MONTANA were the ones who sent the job announcement to me, so of course, I took notice! After reading it over and over and visualizing myself in the position, I made a couple of updates to my resume, sent it in, and asked my wife to pray for me. Since the process takes 4-6 weeks, I knew it would be a while before I head anything, good or bad.

Then, it happened.

FEMA called me yesterday (Friday, November 7th) and told me they want to interview me next Friday, the 14th, for the Regional Disability Integration Specialist position. If, no - WHEN - I am hired, I'll have to travel around Region 8, which is Colorado, Wyoming, Utah, Montana, North Dakota and South Dakota to make sure that the needs of people with disabilities are met before, during and after a disaster.

Because I'll be considered an emergency manager, if a disaster happens, I will have to go to where it is. I'll also have to do lots of outreach and training, as well as write policy on disability integration. I will be on call 24/7/365 and will have to travel quite a bit, being gone sometimes for weeks or months, sometimes living in very austere conditions.

When hired (I have been visualizing myself in the job ever since I saw the announcement), I'll report to the Regional Administrator and the Office of Disability Integration and Coordination of FEMA. My position is unsupervised, so I'll be on my own a lot.

Ok, here it is straight from FEMA:

JOB SUMMARY: As the Disability Integration Specialist, you will prepare individuals, families and communities before, during and after a disaster by providing guidance tools, methods and strategies to integrate and coordinate emergency management efforts to meet the needs of all citizens, including children and adults with disabilities and others with access and functional needs.

EMERGENCY ASSIGNMENT: Every FEMA employee has regular and recurring emergency management responsibilities, though not every position requires routine deployment to disaster sites. All positions are subject to recall around the clock for emergency management operations, which may require irregular work hours, work at locations other than the official duty station, and may include duties other than those specified in the employee's official position description. Travel requirements in support of emergency operations may be extensive in nature (weeks to months), with little advance notice, and may require employees to relocate to emergency sites with physically austere and operationally challenging conditions.

DUTIES: In this position, you will be recognized as an authority, expert, and senior technical advisor on disaster disability integration and coordination issues. You will be responsible for ensuring that the access and functional needs and requirements of individuals with disabilities are being properly included and addressed in all aspects of emergency preparedness are being properly included and addressed in all aspects of emergency preparedness and disaster response, recovery, and mitigation. Typical assignments include:
·         In collaboration with the Offices of the Regional Administrator and the Office of Disability Integration and Coordination (ODIC), participate in developing and implementing comprehensive procedures for managing the regional disability integration and coordination in disaster programs in accordance with Federal policy and guidelines.
·         In collaboration with the Office of the Regional Administrator, participate in developing and implementing Standard Operating Procedures (SOP) that include the needs and requirements of people with physical, sensory, intellectual, cognitive and mental health disabilities to evaluate disaster programs and measures for providing equal access to persons with disabilities.
·         In collaboration with the Office of the Regional Administrator and the ODIC, participate in developing and implementing policies and procedures that ensure equal access for all disaster survivors.
·         Perform outreach briefings, which promote diversity and inclusive practices to include people with disabilities in preparedness and disaster programs that are in compliance with appropriate disability policy and procedures.
·         Perform outreach briefings to raise awareness of reasonable accommodations, policies, procedures, and resources available to disaster applicants in FEMA programs; and process requests in accordance with appropriate Federal regulations.

See? This has Anita Cameron written all over it!

This will be my dream job, and trust me, the pay is WELL worth it and the benefits are awesome! It's a permanent position - a federal job - not tied to any political situations.

So, all of you out there who know, love and respect me - please send well wishes, prayers, good thoughts, good energy, good juju, good vibes and positive affirmations to strengthen my positive visualizations that I have been chosen for the position. I know that I am up against strong candidates, but I know that my passion shines through in my resume, in my writing and when I talk about the subject. All of my skills - teaching, organizing, writing, team-building and advocacy will be brought to bear in this position - I will be an invaluable asset to FEMA. I will dazzle and shine in that interview!

0 Comments

I Get So Tired!

11/5/2014

0 Comments

This is my rant about The Struggle.

I get so tired of always trying to fight the good fight while we elect people who see my kind as criminals, cheats, lazy, useless and unworthy of life.

I get so tired of doing my duty and voting, while others don't bother, then bitch if they don't like the results.

I get so tired of putting on a brave face while wondering what day will I get arrested or die for living while Black.

I get so tired of fighting for legislation that's supposed to protect my rights as a human being, but must be ineffective, or the politicians won't support it.

I get so tired of being a person with virtually no privilege fighting for rights and things that only the privileged will truly enjoy the benefits of.

I get so tired of being trashed as a crazy troublemaker, yet the ones who dish on me gladly and blithely reap the benefits of what I and others put our bodies and lives on the line to get.

I get so tired of hearing people glibly say, don't mourn, organize, when the majority of the ones spouting it won't be in the trenches with me.

I get so tired of bearing up as a proud disabled womyn when precious kids with disabilities continue to be murdered, yet, I'm supposed to have compassion for the monster masquerading as a parent who did it.

I get so tired of people twisting my words, thoughts and intentions when I say that suicide is a tragedy, no matter who does it.

I get so tired of fighting for the rights of people who think they're better than me because I'm a Black disabled lesbian.

I get so tired of seeing calls for increasing the minimum wage, knowing that in many instances, it won't apply to people with disabilities.

I get so tired of hearing people say, put it in god's hands when god helps those who helps themselves and besides that, I'm everything that he hates.

I get so tired of working for good, when evil keeps prevailing.

I get so tired of always having to represent, be articulate, or be on point because I'm being watched and I'm representing my race.

I get so tired of being told I live in a free nation when people are not truly free to start a real revolution.

I get so tired of knowing that each day I open my eyes, I'll have to struggle and fight against hatred and bigotry while privileged people remain oblivious, or get angry and defensive when I point things out to them.

I get so tired of people not understanding that I don't always have the spoons, the energy to organize, to fight, to struggle.

I get so tired of being so tired, yet knowing that I have no choice but to go on, so, go on, I will - fighting the good fight, being brave, organizing, being a good person, doing good things, speaking my truth to power and being in solidarity with my sisters and brothers in the struggle.

0 Comments

Suicide is Awful - Unless You're Disabled

10/8/2014

17 Comments

I'm sure many of you by now have heard the story of the young lady, Brittany Maynard, who has decided to commit suicide on November 1st, because she has a malignant brain tumor. Many folks are applauding her for this, saying how brave she is.

With all due respect to this woman and her family - I call BS! I'm not judging her, but all of the hypocrisy in this.

Suicide is a deeply personal thing; those who do it or consider it are going through some heavy stuff in their lives, so I can't judge.

I can be angry, though, and I am deeply angry about this. Why? Because if this woman didn't have a medical condition, we would be begging her not to do it. In some states, she'd already be involuntarily committed to get her some treatment. But, because she has a tumor, she is considered brave for doing what she plans to do.

I am sick and tired of suicide being romanticized for people with disabilities, yet villified for nondisabled folks. You can't have it both ways. Suicide is a tragedy no matter who does it. It affects everyone around the person who took his or her life - family, friends, loved ones and the community around that person.

Why is it that disabled folks are considered brave for killing ourselves? It all goes back to the societal attitude of better dead than disabled or better dead than to have THAT condition. People see those of us with disabilities as useless and worthless. We are presumed incompetent and our abilities, indeed, everything we do, including the act of living, is called into question.

We humans tend to fear and hate what we don't understand, and disability is no exception. It's why our community is treated the way it is. Sure, many people will say that they support us, but I look at how we are treated by those who have the real power - those who make the laws, rules, policies and systems that govern our lives. I notice that laws designed to protect our civil rights are weak and ineffective, at best. I notice how difficult it is for us to get the health care, particularly the mental health care that we need, especially if we have severe disabilities. I notice how people grumble about how much money we cost, yet, will do everything in their power to keep us out of the workplace.

So, it's no wonder to me why society doesn't mind if we die out. Heck, if they can't do it by abortions and cures, then they can do it by killing us by euthanasia or by allowing, or coercing us to kill ourselves via this death with dignity farce.

What Brittany Maynard plans to do is tragic enough, but it is all the more tragic to the disability community because it is subtle coersion telling us that we not only have the right, but the duty to die. That's what its all leading to - these physician assisted suicide laws and the belief that people with disabilities who take their own lives are heroes - it is leading us down the path to the day when we won't have a choice - we'll have laws on the books requiring us to die - unless we can stop this notion that us killing ourselves is an act of bravery, selflessness or heroism. To get to that, we have to abolish the world view that it's better to be dead than disabled.

Suicide is a horrible, awful tragedy no matter who you are.

17 Comments

Disability Poverty: Modernize Thoughts and Actions, Not Just Benefits!

9/28/2014

3 Comments

The overwhelming majority of people with disabilities live in poverty - not just poverty, but abject poverty. Our unemployment rate overall is upwards of 70%; among groups with certain disabilities, the unemployment rate is upwards of 90%! Oddly, the bigwigs, leaders and decision makers in this country refuse to see this for the injustice it is.

Most of us with disabilities desperately want to work, but face massive discrimination 24 years after the passage of the Americans with Disabilities Act. Today, qualified applicants with disabilities are being discriminated against in the hiring process because employers have become creative in their discrimination tactics, and good employees with disabilities are being unfairly terminated because of their disabilities, but employers are hiding behind lies, little-used laws and other creative reasoning to explain the firing.

Many people with disabilities rely on SSI, SSDI, or other state and government cash benefits programs to survive. With these come medical insurance, such as Medicaid or Medicare, which sometimes pays for medical equipment and long term care needs, such as attendant services. Some of us may have vouchers to pay for some or all of the cost of our housing, but that's not always the case. The downside of these programs is that they keep us stuck in poverty by severely limiting the assets that we can have, or how much money we can make or have on hand or in the bank. If we go over the strictly set limit, even by one dollar, we lose our benefits!

Some groups and lawmakers feel that in order to address the issue of unemployment, there needs to be programs that target and hire folks with disabilities for employment, particularly for the government. That's all fine and well, but that looks and smells a lot like Affirmative Action, which was supposed to help Black folks get hired, but you know how that turned out for us - it was beset with stigma and resentment. It seems that similar programs for disabled folks are just as ineffective, because the rate of unemployment for us has risen, not fallen.

There are also groups that feel that benefits programs for our community needs to be modernized so that we can work and still receive benefits, particularly medical benefits. Though I fully agree with that, I believe that it's more than benefits that should be modernized.

Too many people with disabilities feel that if they work, they'll lose benefits, which often happens. Unfortunately, so many of us are so ingrained (through fear) in our poverty that we'll turn down a good paying job with insurance benefits because we are afraid of losing our Medicaid, not knowing that there are Medicaid buy-in programs if certain services that we need aren't covered by private insurance. Also, some unscrupulous employers are cashing in on this and refusing to pay us livable, decent wages because of this. More on that later.

So, while I believe that benefits need to be modernized, we disabled folks need to modernize our thought processes, imposed on us by the oppressors, and stop believing that we have to live in poverty. If I'm making 30k or 45k a year, with full benefits, there is no need for me to be on SSI/SSDI, which keeps us mired in poverty.

It's not just those of us with disabilities who need to modernize the thoughts that society and the oppressors have put on us. Society, itself, needs to get over the fallacious ideas it clings to about us. We are not burdens better off dead. We are not objects of pity or disdain. We are not cash cows to be made money off of by warehousing us in nursing homes, medicalizing everything we use, even spoons and pencils, by trying to eradicate us with cures and research, knowing that most of the money goes into CEO's pockets, by our slave labor, because we're shut away in sheltered workshops and charity organizations making pennies an hour while CEOs make millions a year. We are not liabilities to be turned away from jobs, schools, restaurants and public places. We are beautiful, with many talents and gifts to offer if you'd just open your minds. We are human beings worthy of life, love, respect, dignity and the human and civil rights that you have, but take for granted. Just as there is no price on your freedom and dignity, there should be no price on ours. We should not be told that it costs too much to care for us in our communities, that it costs too much to provide public accommodations so that we can live and participate in our communities, that it costs too much to educate us, that it costs too much to put us into the mainstream workplace and that it cost too much to protect our civil and human rights.

This humanization of our community needs to start even before birth. Pregnant women need to be told not to abort their disabled babies, but love them and prepare them for a good life. Disabled children need a good, equal education that will prepare them for college or barring that, a good, well-paying job, not a nursing home or sheltered workshop.

The laws designed to protect us from discrimination in the workplace are ineffective, at best. It often takes years or even decades for a case to be resolved and often, we lose. Besides, crafty employers know how to get around a discrimination lawsuit. Also, the fear is often so deeply ingrained in us that we'll suffer injustice, rather than fight back.

Another thing that happens is that some employers have figured out how to cash in on our fears of losing our benefits by not paying us what everyone else gets, citing their "concern" that we'll lose our SSI/SSDI, when all they're really concerned about is their bottom line. What's worse, and I've seen and experienced it, is when nonprofit disability organizations, like independent living centers do it. What benefits we get are none of your business; it's our responsibility to report to Social Security or any other agency that we're working and how much we're making, and take it from there. It is infantilizing, at best and discrimination, at worst, not to pay someone with a disability equal wages because of "concern" about their benefits status - it's the person's concern and their business, not yours - in fact, the question shouldn't even be asked!

Almost everyone with disabilities can work in some fashion, but we are told to our faces that we cannot work, yet society believes that we are shiftless and lazy. This double-think is mind-boggling and must stop! You can't have it both ways. You can't tell us what we can't do, and when we accept this, call us lazy, shiftless scammers intent on living off of society. If you politicians care about our country and our economy, you will truly include people with disabilities into all of your equations, your plans and your political platforms, with comprehensive and effective planning on how this will be done, not just mention us in a speech just to gain points with us, or make some long-winded, ineffective gesture on ADA or Olmstead Day that you know won't be fulfilled.

People with disabilities are a vast, untapped resource begging to be utilized. How, then, do we make it so that more of us are employed and employable, making decent, livable wages? Modernizing benefits will help. Getting rid of laws and loopholes that allow people with disabilities to be paid subminimum wages and stipends is another. Intensive training and education programs inside and outside state vocational rehabilitation programs can help, as well, but care must be taken not to skim off the easiest folks or shunt people with disabilities into certain career paths simply because it's easier to place them there. There also needs to be widespread, intensive, effective and mandatory training for employers about the value of having employees with disabilities. Human resource people and others who train people and write books on how to get a job need to factor in people with disabilities into that training and rethink the tips that they are giving job hunters, because some of those tips, by their very nature, excludes people with disabilities. Also, the laws that protect us from discrimination needs to be strengthened and the lawsuit process must be streamlined. Employers must know with certainty that they will face real, severe reprocussions if they discriminate against us based on our disabilities.

However, these are short-term, now or near-future solutions. What is really needed are long-term solutions that begin during childhood. Children with disabilities need to be integrated into classes with nondisabled kids, and not resented or seen as distractions. If they cannot be integrated, they still need to be given a real education, not special education, because it is neither special, nor education to spend your day drawing, coloring and playing when your intellectual abilities indicate that you can be educated and/or trained to work and live independently with services and supports. Students with disabilities who have an IEP, but who take and complete the same courses as nondisabled students must receive the same kind of diploma at graduation as their peers. Further, colleges should not be allowed to discriminate against students with intellectual and learning disabilities, and should have more programs designed for them, so that they, too, can achieve gainful employment when they graduate.

One final solution is this: The criminalization of Black children in particular, as well as other children of color with disabilities via the pipeline to prison must end. Now. Today. A child in the throes of an autistic or mental health meltdown is not committing a crime. Teachers and school officials must be trained in how to de-escalate the situation, not call the police. Police have absolutely no place in our schools - when they are present, Black kids and other kids of color with disabilities suffer! They gain a criminal record, which is a serious deterrent to their education and their ability to get a job.

The extremely high unemployment rate for people with disabilities in this country is a national tragedy, catastrophe, and shame. Sadly, it doesn't hold enough importance in the minds of the powerful and the powers that be, for them to create and implement bold, powerful and effective solutions to counter this. Since I cannot fathom what the reasons are that they refuse to address this, I can only imagine that there is some unknown benefit to keeping our community mired in poverty.

My people with disabilities, it's time for us to rise up! We need to rise up in a nonviolent revolution for jobs and dignity, just like Dr. King was planning when he was assassinated. We should do marches, protests and sit-ins, just like the Freedom Fighters did for Black people because otherwise, nothing will change. Yes, voting is of the utmost importance, but that is only one tool in our toolbox, besides, politicians will promise the moon to get your vote, then, give you nothing when they get elected - then, it's another two, four, or six years before they're out. Besides, with the new voting laws, it's becoming more difficult to vote if you aren't part of the dominant culture, belong to the wrong political party, or don't have government issued identification. Because we are poor and perceived to be powerless, direct action and nonviolent civil disobedience are our most powerful tools and the only thing the powers that be will pay attention to when you don't have money. We should not be afraid because we'll be doing this not just for ourselves, but for those who cannot do it and those who will come after us. Never forget that our great nation was founded on protest, and that protest was the only way that many of us get our civil rights. Having a job is not a privilege, having a job, if you are able to work, is a right and a responsibility. We must fight for that right and responsibility because nobody is going to give it to us!

3 Comments

I Don't Get It: Lack of Access at Doctor's Offices

9/9/2014

11 Comments

Back in August, I had an appointment with my new doctor. I got there a few minutes early and saw that the office was in a residential neighborhood full of those Victorian style homes with a million steps up to the front door. This office was no exception, but it DID have a VERY nice ramp. The problem was that the ramp had a gate and the gate was locked! I sat there in my wheelchair utterly flabbergasted and pissed off, especially since, at the time, I didn't have my cell phone with me to call them. In hindsight, it was probably good that I didn't have it, as I was pretty livid. Fortunately, a lady driving by saw me fuming (trust me, I was definitely out of place in that neighborhood) and asked if I needed help. After I explaining my predicament to her, she went in and got the receptionist to come open the gate to the ramp and let me in. Of course, I asked why would there be a gate in front of an accessible entrance, and a locked gate, at that. Of course, my question was studiously ignored. Later, I learned that if you use a chair, you have to let them know that you're coming so that the gate will be open. I didn't see my doctor that day, but saw his medical assistant. Apparently, the fuss I made was such that the next day, my new doctor called to apologize profusely, saying that the gate was there to keep skateboarders off, and that the rule is that it is supposed to be opened during business hours; his staff forgot to open the gate and he'd gotten on their case about it - so sorry, so sorry, it'll never happen again!

That was bad enough, but it gets better - NOT! I was taken to a tiny, cramped examining room that I could barely get into, nor maneuver my wheelchair. The examining table was inaccessible, as was the scale. A quick peek at the restroom told me that if they wanted a urine specimen from me (they did), it wasn't going to happen!

While normally, that visit would have been my last, I'm stuck because that doctor is the only one anywhere near my house (two buses and an 8-block walk) who accepted my insurance AND was accepting new patients.

It wouldn't matter, anyway. Almost every doctor's office, clinic and hospital is inaccessible in some way, to people with disabilities, particularly, those of us who use wheelchairs. Often, as in my own experience, even though we can get into a building (sometimes we can't, due to steps or inaccessible doors), we can't access the equipment, such as scales, examining tables, x-ray and mammogram machines. Further, just try asking for a sign language interpreter and see what happens! Also, most offices have that harsh fluorescent lighting that doesn't work well for autistic folks or those with epilepsy.

I just don't get it. Doctors deal with folks with all kinds of conditions; you'd think that they would have equipment that everyone can use, to say nothing of an office and examining room that everyone can get into, especially in this post-ADA era that we are living in. That makes sense, doesn't it?

The truth is this: Doctors treat sick people, not disabled people. Sick and disabled are not synonymous; folks with disabilities are often quite healthy. Often, unless a doctor specializes in treating people with certain disabilities, they don't know how to deal with us.

Sadly, doctors are just like most of society when it comes to disabled folks; we simply are NOT on their radar. That may be surprising, given the profession, but this is borne out by the utter incomprehension of doctors when the subject is brought up. It's not that accessible equipment doesn't exist, it's that the majority of doctors and hospitals fail to research where they can find the equipment, then, purchase it.

Frankly, I'm sick and tired of this. It's infuriating to know that here in the 21st century, 24 years after the passage of the Americans with Disabilities Act, people with disabilities are still facing physical and attitudinal barriers when it comes to accessing health care. While I understand that small practices may not be able to afford accessible medical equipment, it pisses me off that large offices and hospitals, particularly those owned and operated by universities, which receive federal funding, still don't have equipment that's accessible to everyone. What really ticks me off is that the hospitals owned and run by churches and religious organizations are exempt - they don't have to be accessible. Still, you think they'd go ahead and do it. After all, doesn't the higher power care about everyone?

Being treated like a second class citizen hurts, to say the least. Personally, I think it's time to take action. Letters and lawsuits are fine, but I think that the time has come for nonviolent direct action. Pickets. Protests. Vigils. Shutdowns. It may be radical, even sacrilegious, but so what? It's obscene, even criminal that many in our community still face inaccessibility at the doctor's office!

11 Comments

I Just Want To Know

9/7/2014

0 Comments

Each day, at least 3 or 4 times an hour, I hear stories detailing the horror of what it's like to be me - a Black, disabled, poor, lesbian. I wonder, then, what is it like to be someone other than me? I've thought about that a lot, since I was a small child. What would it be like to live for a day, a week, a month, a year as a member of the dominant cultures?

Now, let's not get things twisted, haters. I am in no way saying that I don't want to be me, or that I'm ashamed to be me. I'm just dreaming, ok? You know, how sometimes, kids will dream of being princes or princesses, or adults dream of being super rich and famous? It's the same thing, except that 1. for you, it's reality and 2. I don't want to stay. Besides, it's all well and good for you to look down on me and try to shame me; you sure as hell aren't wanting to know what it's like to be me!

Let's get this started, shall we?

Let me get money out of the way, ok? I know what it's like to be well off. I was born into such a family. My birth dad worked hard to get the family to the state it was by the time I was born, and beyond. I know what it's like to go to the opera and plays and eat at five star restaurants. I know what it is to live in a nice house and to have several homes, cars, TVs, phones, back when most families only had one of each - maybe. Unlike many rich folks today, our family knew the value of money, so we didn't splurge often. We were not extravagant. We had nice clothes, but we weren't fashion plates. We had several nice cars, but not Ferraris, Rolls Royce's or Mercedes. Ok, so you get it, right? We didn't need to bring attention to ourselves simply because we had money. When I had my cushy jobs, I was the same way. Yes, I lived in nice buildings in nice neighborhoods, but that was all. My years with the nuns taught me that having a ton of money while others suffered was obscene, so, to this day, I don't want to be rich - I do want to be comfortable again. I want to be able to pay my bills and have a good amount of money left over. I want to be able to save money and to have some nice things again. Thankfully, this is the only dream that is within my grasp. All it will take is me either getting the right cushy job again or starting my own business again and working to make it take off. I plan to open a business again very, very soon, so relative wealth, with hard work is within reach.

Now, on to the hard stuff.

I want to know what it would be like to be a guy. How does it feel to know that you rule the world, that you are favored, that you make all the rules that govern people's lives, that you are taken seriously, that you are the stronger gender, that you are superior? How does it feel to know that even if you are rock-bottom poor or severely disabled, that you are still better than people like me? I'd like to know what that feels like, just for a little while!

What's it like to be White? All my life, I've wondered about that. I never developed the gonads to ask my White friends, family or even my beautiful wife, so I'm asking you, my readers. What is it like? What's it like to to know that you are the top, that you are superior? How does it feel to know that you rule the world, that you're automatically thought to be the smartest, that though you are dirt poor and severely disabled, you're still better than folks like me, because, at least, you are White? What is it like to know even without being aware of it, that you don't have to care about what I care about or know the things that folks like me need to know in order to survive? How does it feel to know that you can go anywhere, do anything, be anything? What's it like to have automatic privilege so ingrained and inherent that you don't even know you have it until it's pointed out to you? What's it like to know that you can make all kinds of mistakes, live a life of crime, be as obtuse, unclever, unlearned and ignorant as you'd like, and it won't be ascribed to your entire race? How does it feel to know with certainty that you can make all kinds of shady deals, have no scruples or ethics, work the system, live off welfare, hustle and scam and it'll be on YOU, but not your entire race? What's it like to know that in the Western world (which is the one that really matters), your culture is the dominant one, your beauty is the ideal beauty, your history, literature, philosophy, poetry, etc., are automatically taught in schools, and people like me had better learn it better than you if we want to succeed? What's it like to know for sure that your life is priceless, while mine is worthless, that though you were a horrible excuse for a human being, when you die, good things will be said about you, but, though someone like me lived an exemplary life, when we die, people will try to dig up any dirt they can on us? What's it like to be a pauper, but know you can go anywhere with ease, while folks like me who are millionaires and billionaires get followed around stores, publicly frisked because we might have stolen something, denied in all kinds of ways, and assumed that our wealth came from criminal activities, while your wealth is assumed to come from hard work or family inheritance? I mean, really, what is it like to have all these perks simply by virtue of the color of your skin? I want to know what that's like. I want to live it, if only for a little while, so that I can understand, so that I can be - oblivious, live in peace, be - valued.

I want to know what it's like not to be disabled, or have a visible disability. I want to know what it's like not to be thought of as stupid, what it's like to be valued as a person, to know that if I'm bullied, something will be done about it, and it won't be seen as a joke, or nothing serious, that if my parents killed me, that they wouldn't be seen as heroes or long-suffering. I want to know what it's like to not have to face physical and attitudinal barriers at every turn. I want to know what it's like not to have to fight for civil and human rights that you take for granted. I want to know what it's like not to have a price on my freedom and independence - if I don't cost the state or government over and above x amount of dollars, then, I can live in my community, get the medical treatment that I need, get the equipment, services and supports that I need to survive and live on my own. I want to know what it's like to go into a store, theatre, restaurant, stadium, school, courthouse or place of worship and know that I won't be stared at, be told I'm in the way or that I'm a fire hazard or have someone be rude to me simply because they can, or act strange because they don't know how to deal with me, or ask someone else what I want.

I wonder what it is like not to be seen as an abomination because of my orientation, what it's like not to have to worry about getting beat up or killed or disowned or fired or discriminated against because of my sexuality, what it's like not to be expected to hide or live a lie because of whom I love.

Seriously, folks, I wonder about this. I wonder and even obsess on this quite a bit. How can't I, when literally every day, even every hour of my life, I hear of someone who belongs to one of the groups that make up me is killed or some other injustice is visited upon them? Is it any wonder that sometimes, without hating ourselves, people like me may wonder what it is like not to be us? It's not that we don't like ourselves, our culture, our beauty, it's just that we are - I - am curious.

Now, here's a serious question - do you wonder what it's like to be me? No, not the cool, quirky Angry Black Womyn you know, think you know, or have heard of - I'm talking about the Black woman in the wheelchair you see on the street. I'm talking about the Black guy in the hoodie or the Latina girl in your class, the Asian guy sitting next to you on the bus, or the lesbian Native American woman marching in the Pride parade, the kid with down's syndrome who walks your dogs, or the autistic kid who's always there to help you carry your groceries into the house. Do you wonder what it's like to be us, to understand where we are coming from, to have some inkling of our lived experience? Do you even care to know - or are you scared? What do you feel? I want to know!

0 Comments

STOP universalizing our messages!

8/31/2014

1 Comment

"Personal empowerment, as it relates to disability, seldom comes from trying to look or act less disabled, but from our willingness to love life and invest in it using the abilities we possess." - Maria R. Palacios

Here we go again!

My badass, gorgeous sister in disability, Maria R. Palacios, penned the above quote on her Facebook page. Wouldn't you know it - someone had to post this in response: "Pretty sure that's true even as it DOESN'T relate to disability. Seems universal" Of course, that got my blood boiling!

Stop it, folks just stop it NOW! Can't we have something of our own? I'm not a selfish person; I love to spread the wealth. I know that there are some messages that are generic enough to be considered universal. What irks me is when someone tries to take a message that is specifically and explicitly for, or directed at a specific community, in this case, people with disabilities, and make it for everyone when clearly, the message was NOT for everyone. My response was this: "Yes, but this message is vitally important to those of us with disabilities because all the messages out there tell us that we are unworthy, not good as, other, better off dead - it IS for US!"

The vast majority of us with disabilities who love ourselves, are comfortable in our own skins and who know our worth have had to travel a long journey to get to this place where we are. Every day, we deal with messages telling us we're unwanted, unloved, useless, worthless, pitiful, incompetent, ugly, other, better off dead. We see it in the way people stare at us, ridicule and exclude us, in the way we are forced to live in poverty and unemployment, in the way that laws that are supposed to prevent and protect us from discrimination aren't worth the paper it's written on. With all that, is it any wonder that many folks with disabilities would give anything not to be disabled? Is it any wonder that some disabled folks go to great lengths to hide or minimize their disability even to their own detriment? Is it any wonder that there are people with hidden disabilities, who, due to the fear of being stigmatized and treated as a second-class citizen, hide their disability so well that you could know them for decades, even all their lives and not know that they had a disability? Is it any small wonder that many of us internalize the ableism, disdain, even hatred that society directs at us? After all, we don't want to be seen as one of THOSE people!

Having gone through this, myself, when I hear messages from others with disabilities that say that we are beautiful, competent, loved, worthy, awesome, amazing, sexy, talented - I hold on to that with all my might! Needless to say, I get pretty damned frosty and salty when someone - most likely, nondisabled - pipes ups and says that the message meant for me and my community can apply to everyone. Oh HELL no - oh no you didn't just slide your butt up in here and try to minimize and trivalize the beautiful, powerful message given by one of our own and meant specifically for us! What, you don't have enough positive messages coming to you from your community that you have to try to steal and co-opt one of ours? Call me selfish but I'm not about to let that happen - I WILL call you out!

To me, when someone tries to universalize a message intended for a specific community, it's the same as derailing, which is taking someone ese's conversation and making it all about you and/or your group. Those of you who know me know in no uncertain terms how I feel about derailing. I feel the exact same way about universalizing, whether it's a message to a specific group, or a particular group's lived experience - just don't do it!

1 Comment

Police And People With Disabilities: Why Do They Kill Us?

8/25/2014

1 Comment

The recent murder by police of Eric Garner, Ezell Ford and Kajieme Powell has got me to thinking about the oppression of disabled people of color, particularly Black folks. Although the oppression of people with disabilities and the oppression of people of color, particularly Black people, are different forms of oppression, things get pretty complicated when you're dealing with both in one person. Trust me, as a Black disabled lesbian, I'm fully aware of intersectionality and it's importance.

Still, I'm very angry about the fact that increasingly, interactions between disabled people of color and law enforcement results in the death or serious injury of the person whom the police are responding to. Why does that happen? Why do they brutalize and kill us?

Two things stand out for me when I read or hear about these murders. 1. The person with a disability is almost always a Black man. 2. Their disability is almost always hidden; most often, it is a psychiatric disability, but autistic folks have been murdered by cops, as well. Now, haters, I'm not saying that White folks with disabilities don't get murdered by cops. I'm saying that the vast majority of disabled folks getting killed are Black and folks of color. Nor am I saying that the murder of someone Black or of color is more important than someone White because it isn't, BUT, society values Whites far more than Blacks and people of color, so the murder of a White person produces more outrage AND a White person is far more likely to get justice than someone Black or of color.

I've come to the conclusion that police, like most in society, don't give a rip about disability, especially if they cannot see it. In addition, people with mental health disabilities are often stigmatized and criminalized, so cops have very little patience with someone who is going though a crisis. Compounding this is the fact that Black men and teenage boys are seen as menacing, threatening, thugs and criminals even when they are unarmed and/or minding their own business; this even applies to little boys. Further, Blacks and other folks of color are more likely to be accused of faking, exaggerating or using their disability as an excuse for acting out. Together, these factors are a perfect recipe for tragedy.

These days, it seems that police and other law enforcement are trained to mistrust everyone, especially if they are Black or other folks of color. To me, it seems that to a cop, every Black person is a suspect, a criminal, a thug, an animal, a rabid dog, good only to be shot. I think of the line in that 2Pac song, "Changes": "Cops give a damn about a negro? Pull the trigger, kill a n----, he's a hero." Even when they are acting civil and nice, I catch the vibe that they don't respect me.

For you folks who know nice cops, or who have family members who are (or were) members of law enforcement - that's great - I'm glad because you are indeed fortunate. I'm sure there are some out there, but it has been my experience and that of the majority of Blacks and folks of color that cops, no matter the race or gender, see us as the enemy. I include Black cops, cops of color and women cops in this because if they want to succeed, they HAVE to be better at the White cops' game than White cops are. Yes, I know that in ADAPT, we are taught that the police are not our enemy. That may work - sometimes - at an action, but in real life, I KNOW where I stand with them. Still, I am respectful towards them, not only because I'm just that type of person and I like to give everyone a chance, but also because I know that disrespecting a cop could cost me my life! Another thing about so-called "good cops" that bothers me is no matter how angry and embarrassed that they are by their colleagues' behavior, they choose to uphold the culture of silence and not report or speak out against their fellow cops. That speaks volumes to me! In my opinion, your silence makes you part of the problem, so until you can find the gonads to speak up publicly, you can get out my face with your "shame and anger" - tell that mess to someone who will believe you, because it's certainly NOT me!

With that, is it any surprise that police often brutalize people with disabilities? Of course not. Cops are human and unfortunately, humans don't like humans who are different than them or their group. We folks with disabilities are seen as useless, worthless objects of pity. People would rather be dead than be us. We are still fighting for civil and human rights that others take for granted. Programs, agencies and legislators try to put a price tag on our freedom, indeed, our very lives. Policies are made about us without consulting us and they don't understand or care when we get angry about it. In community life, we are an afterthought, at best; most often, we're not even on the radar. Most diversity training programs don't even include us, so it's no wonder that police aren't trained on how to interact with us. Unfortunately, these amped up cops don't have a shred of patience or empathy - one of the officers sent to calm down Keith Vidal, a White 18 year old with schizophrenia, said, "I don't have time for this" - then, shot him dead! Kajieme Powell, who was clearly going through a mental health crisis, was shot dead 14 seconds after police arrived on the scene!

What can be done to stop this? What can we, as people with disabilities, Blacks and people of color do to make police see our humanity and our worth so that they will stop killing us on a whim? What will it take? I don't have the answers but I do know that we are tired. The killing must end.

1 Comment

<<Previous

Disability Laws Serve Politicians, Not Us!

I Have No Refuge

A Call From FEMA

I Get So Tired!

Suicide is Awful - Unless You're Disabled

Disability Poverty: Modernize Thoughts and Actions, Not Just Benefits!

I Don't Get It: Lack of Access at Doctor's Offices

I Just Want To Know

STOP universalizing our messages!

Police And People With Disabilities: Why Do They Kill Us?

Categories

Archives