When doctors make life more difficult we pay enough so why should we pay again for incompetence?

When you go to a doctor for the most part you have a problem you are worried so you go to get piece of mind.

When you’re disabled doctors become like breathing, you have a, orthopedic surgeon  you have a neurologist you have a endocrinologist you have a rehabilitation  therapist and quite often a therapist to handle the depression that comes with suddenly finding yourself disabled. Now that was an example, it changes for whatever your medical diagnosis is.

Now to afford this my spouse pays $700  a month for insurance out of her pay, we pay $50 co pay every time we see a doctor ,we pay $50-$200  for every blood test and we pay $500 every time I go to hospital then its $1,00-2,000 out of the ten thousand plus for the stay. On top of that I am on 7 different tablets and one injectable medicine and they cost $250 every two weeks and my wheelchair was as expensive as a four cylinder car.

On top of that every time I leave the house, if the government hasn’t fixed the elevators at the subway its $100 round trip to go anywhere in a vehicle that can take my chair.

So you say mia life’s tough  yes its tough but I live with it in fact most of the time I kick it’s ass before it kicks mine, I have systems I chose doctors carefully  and made sure they are professional and their office staff even more importantly are efficient.

Then you have times like today, I have been getting annoying collection calls for a medical bill I don’t owe that the insurance covered for the last year. Every three months we solve it they apologize and they promise it will never happen again, then three months later the calls start again. So today I called the direct number for my neurosurgeon to get his office manager involved because she has always been on top of everything in the past,. Unbeknownst to me since my last call they have installed a call over flowSystem so it went like this

I dial doctor Cohen’s number  the phone is answered by someone who tells me very curtly I dialed the wrong number,  I tell her I didn’t dialed it’s the same number I have had programmed In for the last 2 years. They give me a number it’s the number I dialed so I hang up

I dial doctor Cohen’s number It goes to his overflow again, they tell me I again must have dialed the wrong number so they again give me a number  it’s again is the same number I dialed when I got them so I hang up.

I dial doctor Cohen’s number  and again I get the overflow and again everything above happened and again they were rude and again they gave me a number to dial, and again it was the number I dialed to get them.

 This went on for many calls,they were rude they were smart ass and they were homophobic and abusive. But if I don’t put up with it almost 3 years of tests and results and treatment and actually getting somewhere with my diagnosis has to be done again, because of the ego’s of doctors they won’t listen to someone else’s results.

So in an average month after paying over $1, ooo I am expected to be treated like this and take it.

So to everyone who says “why do you get so worked up in your blog Mia?” Well this is why, now to be fair they promised it’s sorted out and will never happen again? Hmm as they did in May and February and October 2011 and July of 2011! So If I believe them what are the mortgage payments on the Brooklyn Bridge?

MTA Doesn’t Care for New York’s Disabled

Really New York, you promote yourself as the Crossroads of the World, but even a crossroad has a safe set of cross walks controlled in a way to make travel safe for all.

When I first arrived in New York in 1998 I stayed in a backpackers with the dubious name of Banana Bungalow on the Upper West Side. When I paid for my room I got a welcome pack with a brochure from the MTA telling me how easy use of the subway and bus system was and it was available to all, yes all.

Well when I emigrated I was 6ft 3 inches  and upright and had no idea of the wheelchair that was waiting in my future so when I ran up stairs to catch every train or down stairs to every subway I thought “wow they’re right it’s easy.” Fast forward to yesterday, 14 years and 8 months later. I had spent a great late afternoon attempting to master the 5 story high rock wall at Outward Bound NYC. When we left we were directly under the 7 train so we knew a station wasn’t far. We rolled about 4 blocks, asked bus drivers, asked off duty mta workers and locals alike all to no avail.  Apparently all three stations in the area had stairs everywhere but no elevator. So after a day of showing that as a disabled woman I was able to do whatever the able-bodied can do and most times better I was forced to crawl up not one but three double flights of stairs leaving any vestige of pride and dignity  at the bottom of the first flight. I literally sat on my butt, used my thankfully increased upper body strength to lift myself using the guide rail to the next step and so on. Each flight was the height of a two storey building. I dragged my butt up 300 steps  dragging my thankfully light chair behind me. The system was drag myself up two steps then my chair up one I did this 150 times on my ass.

This was not the first time. Three months ago I had to crawl down two flights at 14th and 8th because the elevator listed as working on the official MTA website was broken. I have had to do this twenty or more times but IT MUST STOP.

I pay taxes. I contribute. I work tirelessly for my community. I help promote adaptive sports and I am completely self-supporting. I do not receive I cent of welfare or Medicare or Medicaid or public assistance of any kind, but even if I did every single citizen deserves to not have their dignity stolen like a New York mugger by government incompetence.

NYC subway system has 468 stops and station 270 elevators but only at 60 stations and they brag on their website that on any given day less than 17% work that is their bragging number.

Mr. Bloomberg likes to tell all who listen that caring for the disabled community is not now or will it ever be the responsibility of his administration and that we have no right catching cabs so why shouldn’t they be accessible? He tells us to catch the subway then I say BLOODY WELL FIX IT AND MAKE IT COMPETELY 100%  ACCESSIBLE  — 468 stations all with elevators.

RESPECT OUR EXISTENCE OR EXPECT OUR RESISTANCE

Factsheet on Persons with Disabilities

  • Around 10 per cent of the world’s population, or 650 million people, live with a disability. They are the world’s largest minority.
  • This figure is increasing through population growth, medical advances and the ageing process, says the World Health Organization (WHO).
  • In countries with life expectancies over 70 years, individuals spend on average about 8 years, or 11.5 per cent of their life span, living with disabilities.
  • Eighty per cent of persons with disabilities live in developing countries, according to the UN Development Programme (UNDP).
  • Disability rates are significantly higher among groups with lower educational attainment in the countries of the Organisation for Economic Co-operation and Development (OECD), says the OECD Secretariat. On average, 19 per cent of less educated people have disabilities, compared to 11 per cent among the better educated.
  • In most OECD countries, women report higher incidents of disability than men.
  • The World Bank estimates that 20 per cent of the world’s poorest people have some kind of disability, and tend to be regarded in their own communities as the most disadvantaged.
  • Women with disabilities are recognized to be multiply disadvantaged, experiencing exclusion on account of their gender and their disability.
  • Women and girls with disabilities are particularly vulnerable to abuse. A small 2004 survey in Orissa, India, found that virtually all of the women and girls with disabilities were beaten at home, 25 per cent of women with intellectual disabilities had been raped and 6 per cent of women with disabilities had been forcibly sterilized.
  • According to UNICEF, 30 per cent of street youths have some kind of disability.
  • Mortality for children with disabilities may be as high as 80 per cent in countries where under-five mortality as a whole has decreased below 20 per cent, says the United Kingdom’s Department for International Development, adding that in some cases it seems as if children are being “weeded out”.
  • Comparative studies on disability legislation shows that only 45 countries have anti-discrimination and other disability-specific laws.
  • In the United Kingdom, 75 per cent of the companies of the FTSE 100 Index on the London Stock Exchange do not meet basic levels of web accessibility, thus missing out on more than $147 million in revenue.

Education

  • Ninety per cent of children with disabilities in developing countries do not attend school, says UNESCO.
  • The global literacy rate for adults with disabilities is as low as 3 per cent, and 1 per cent for women with disabilities, according to a 1998 UNDP study.
  • In the OECD countries, students with disabilities in higher education remain under-represented, although their numbers are on the increase, says the OECD.

Employment

  • An estimated 386 million of the world’s working-age people have some kind of disability, says the International Labour Organization (ILO). Unemployment among the persons with disabilities is as high as 80 per cent in some countries. Often employers assume that persons with disabilities are unable to work.
  • Even though persons with disabilities constitute a significant 5 to 6 per cent of India’s population, their employment needs remain unmet, says a study by India’s National Centre for Promotion of Employment for Disabled People, in spite of the “People with Disabilities” Act, which reserves for them 3 per cent of government jobs. Of the some 70 million persons with disabilities in India, only about 100,000 have succeeded in obtaining employment in industry.
  • A 2004 United States survey found that only 35 per cent of working-age persons with disabilities are in fact working, compared to 78 per cent of those without disabilities. Two-thirds of the unemployed respondents with disabilities said they would like to work but could not find jobs.
  • A 2003 study by Rutgers University found that people with physical and mental disabilities continue to be vastly underrepresented in the U.S. workplace. One-third of the employers surveyed said that persons with disabilities cannot effectively perform the required job tasks. The second most common reason given for not hiring persons with disabilities was the fear of costly special facilities.
  • The Job Accommodation Network (JAN) of the U.S. Department of Labor’s Office of Disability Employment states that the employers in the 2010 study reported that a high percentage (56%) of accommodations cost absolutely nothing to make, while the rest typically cost only $600..
  • Companies report that employees with disabilities have better retention rates, reducing the high cost of turnover, says a 2002 U.S. study. Other American surveys reveal that after one year of employment, the retention rate of persons with disabilities is 85 per cent.
  • Thousands of persons with disabilities have been successful as small business owners, according to the U.S. Department of Labor. The 1990 national census revealed that persons with disabilities have a higher rate of self-employment and small business experience (12.2 per cent) than persons without disabilities (7.8 per cent).

Violence

  • For every child killed in warfare, three are injured and acquire a permanent form of disability.
  • In some countries, up to a quarter of disabilities result from injuries and violence, says WHO.
  • Persons with disabilities are more likely to be victims of violence or rape, according to a 2004 British study, and less likely to obtain police intervention, legal protection or preventive care.
  • Research indicates that violence against children with disabilities occurs at annual rates at least 1.7 times greater than for their peers without disabilities

Hey honey you won’t make much without a cup for money?

Today I was meeting a publicist and internet journalist, she had never been to flushing before so I waited in front of the mc Donald’s by the subway stairs for her. She was a little late and I was  a little early so I had about  20 minutes to kill, so sitting in my custom designed expensive wheelchair with a special metallic purple paint job and while wearing expensive work out gear listening to a 400 dollar I-phone. I was wearing makeup and expensive eye glasses so  the last thing I think I looked like was a homeless beggar, so I’m rocking to some classic Australian music and in my own world when suddenly someone flicks my ear. Due to the history of being mugged a couple of times, I spun around ready to defend myself and there was an elderly Russian woman who blurted “hey where’s your cup? If you want to survive on the street honey loose the attitude and get a cup” and she threw 2 quarters at me and walked away I screamed I’m not a beggar.

5 minutes later another elderly woman this time Chinese, offered me a dollar note, what the fuck? The next person who tried I said I am not a beggar what makes you think I am? “Well you’re in a wheelchair aren’t you?” I said what the hell has that got to do with it? Well everyone knows you people don’t get much so you make a living begging!

This is why we get no money from congress, no recognition of our rights and people look down upon us as second class, in under 20 minutes on a street in my neighborhood no matter how clean and well dressed I am in a wheelchair so I must be a destitute beggar was the consensus.

Wakeup folks women no longer stay bare foot and pregnant gay people don’t all dress like Ru-Paul black women don’t dress and talk like foxy brown.

Stephen Hawkins the most intelligent man in the world is in a wheelchair, great people doing great things all over the world are in wheelchairs  there are captains of industry and teachers at the best ivy league schools, hell  even a former president of the united states was in one, sadly until this bigoted attitude changes nothing much else will.

As if Disabled Transportation wasn’t Impossible Enough on NYC Subways

If you are even a semi-regular reader of this blog you will be very familiar with our constant frustration with NYC transit. This is Ella, Aka .. She who Must Be Obeyed, writing.

Aside from the usual issues of lack of elevator access to subway stations, the irregular reporting of what elevators are working within the system, the lack of safe spots to ride within a given subway car, we have the challenge once on being able to get from point A to point B safely. 

Yesterday, we got up early to head to Brooklyn Boulders for The Climbing for Cancer event. All of the stars aligned and we got on the train, got to the event (albiet late thanks to track work) and had a blast. We decided to throw to caution to the wind and spend the afternoon at the Union Sq. Markets. Getting off the train at 14th Street here in NYC was, well… Dangerous.

Above you will see the extreme gap between the train and the platform. It was well in excess of 12 inches and also considerably elevated above the platform itself. Mind you train doors in NYC open for like 2 minutes and you need to get out before they close. Conductors often don’t see passengers as they get on and off to the point where there have been many an instance of passengers getting caught in subway doors and dragged down the platform. Only last year in NYC a women with a baby in a carraige was caught in the door and the carraige was dragged another complete stop. Thankfully a passenger still on the train grabbed the baby as it started to fall and the mom, with police help, was reunited with her child at the next station.

In other instances, elderly passengers using walkers that dropped down from the train to the platform edge found the passenger hurt, sometimes significantly. So yesterday, I admit I paniced. Mia was in her chair faced with both a significant drop and a large chance that her chair would in part fall and get stuck in the gap. Luckily a passerby helped me hold the doors open as they started to close and lifted the bottom of Mia’s front wheels so that we could get her on the flatform saftely.

Now… my mind immediately goes to … What if Mia was alone? What if no one was around to help or cared to (which isn’t all that unexpected)? What if the train doors closed sooner and we couldn’t get them open?

As a partner of a disabled person these are the thoughts that keep me awake at night and scared each time my partner leaves the house alone. And truly, they would be unnecessary if NYC Transit thought about the safety of disabled riders for more than two seconds.

These aren’t things that the average nyc rider considers because we just step over the gap, around the obsticals and when the elevator or escalator is broken, we walk. Yes we hear about the occassional accident that gets reported on our local news, but truly with all the fires, rapes, murders in NYC… these stores go in one ear and out the other.

When disabled riders and their families point out these and other dangerous and/or inadequate conditions, the person we are speaking to is not disabled and has no understanding of the challenges we describe. Quite seriously, this makes no sense. In a Hasidic community in Brookyn, NY where Mia and I lived/worked years back, the NYPD when responding to a crime in the area where themselves Hasidic. If NY’s police department were smart enough to realize the benefits of officers recruited from the communities they serve, why wouldn’t it make sense for the MTA to grasp the same concept and involve the disabled community in issues that only the disabled community can fully address.