Visitability and Accessible Homes

Okay. As a PWD who loves living in the community and not in an institution -- there are hurdles and challenges, as we all know.  It is due to these challenges, that activists before me blessed me and other PWDs with the passage of the ADA [Americans with Disabilities Act of 1990].  Before the ADA, PWDs were largely confined to their homes [IF they were lucky enough to have a support system that allowed them to do that] and a limited number of places that just happened to have an entrance without steps, elevators and wide enough spaces to maneuver a wheelchair.

So the concept of the ADA was born many years before 1990, and I am grateful for the activists who fought tirelessly for the bill's passage a good 14 years before I would need it.  At the time the ADA was passed, I was an airline sales manager who attended many meetings with travel agents who were very vocal about how "unfair" it was that they had to comply with the ADA and put ramps at their entrances and retrofit their restrooms to be ADA-compliant.  Let me be honest: during this time, I was wearing a size 4, walking with heels and working out at a gym 5-6 times a week.  Although I was sympathetic with PWDs, I never dreamed I would ever need use of a ramp or a grab-bar.  I'm a little abashed to say that I could see both sides of the argument:  I knew it was important for PWDs [which I called "handicapped" at the time] to be able to enter places of business, but I could also sympathize with small and privately-owned businesses that had to shell out tens of thousands of dollars to make structural changes for the one or two wheelchairs a year to grace their premises.  After all, PWDs who lived in the community were not as common as they are today.  Couldn't they just send a friend or family member to do the errands for them?  This was also a time when airlines were cutting travel agents' commissions, and airline and travel industry forecasters were predicting that some day down the road, travelers would be able to book their reservations and even print their own tickets and boarding passes on personal computers in their own homes!  So travel agents were livid at the prospect that they could be obsolete one day.  This ADA was the icing on the cake.  I got it.

Fast forward to the present.  How many people use travel agents?  How many travel agencies still exist?  And we all know the impact of the ADA: ramps, curb-cuts, automatic push-button entrances.  We still have a way to go: I still have to send an aide into my local bagel shop and Chinese takeout because they have steps at their entrances.  And I have even blogged about doctors' offices where I had my breasts examined in hallways -- see my post of Friday, August 21, 2015  [I avoid those now]. We can now sue those establishments that remain inaccessible [I haven't had the time to take on the bagel baker, the Chinese takeout or the pizza shop that put down a hazardous concrete "bump" -- I've had to choose my battles].

There remains a huge obstacle -- visiting friends.  I cannot visit most of my friends.  Even with a portable ramp which only goes over one step, I still cannot visit most peoples' homes.  I'm getting tired of hearing "I would love to invite you for Christmas/ New Years/ Easter/ Passover/ my kid's birthday party/ my birthday party/25th anniversary party/ to hang out and have dinner......fill in the blank. It's bad enough that even if I could get in, I can't use the bathroom, which is often too small to fit my wheelchair and never has grab-bars.

  I start to wonder "Is this a handy excuse?", but in most cases, I know it's not; in most cases, I know these people would like to have me and don't want me to spend holidays alone, or to bring leftover food or birthday cake to me after-the-fact. Even my own sister and her family invite me for Thanksgiving every year and have to carry me up six steps in my manual wheelchair.  What do I do?  I don't expect them to change the venue just because of me; they want to hold a celebration in their own homes and it's not their problem if I can't get in.  How about this?  There are people whom I met since I became a wheelchair user and/or have moved in the last 13 years, whose homes I have never seen and never will see. "Visitability" is still a hurdle to deal with.  If I could afford to install an elevator at my sister's home [a ramp accessing 6 steps is impractical] and accommodations at my friends' houses, I would do it.  But alas, I'm not a Trump

Enter the Home Modification or Visitability Tax Credit.  This credit helps with home modification to allow a PWD to live in the community rather than suffer a homebound existence or -- worse yet -- life in an institution.  And with people living longer, "aging in place" has become a choice, there is a need for accessibility for residents who use wheelchairs, walkers and canes as they age. The New York State Legislature has included the Visitability Tax Credit in both the Senate and Assembly's one house budget proposals! If you live in New York State, please follow the instructions below, to make sure the tax credit is included in the final budget! Tell Governor Cuomo To Support Community Living.

Don't live in New York State or even in the United States?  Find out if your state, city, county, province or national legislative body has a law like this on the books or in the works,  If not, use New York State as a reference and try to spearhead an effort to legislate such an act in your area.  It is an essential element in community living for PWDs.


 Action: Call Governor Cuomo today at 518-474-8390 and urge him to support the inclusion of the Senate and Assembly's proposal for a Visitability Tax Credit in the final budget!

Rather than leaving a message, press # 3 to ask to speak to an assistant.
         
Say: "Hello, as a person with a disability, I am calling to urge Governor Cuomo to support the inclusion of the Visitability Tax Credit, which was included in both the Senate and Assembly's one house budget proposals. This tax credit would help people with disabilities and older New Yorkers with the costs of making their homes more accessible and would allow people to age in place "

Wheelchair ramp leading to the main entrance of the South San Francisco Main Library, South San Francisco, California.

By BrokenSphere - Own work, CC BY-SA 3.0, https://commons.wikimedia.org/w/index.php?curid=3864507.

-  One no-step entrance
- An accessible path to the door
-  hallways and doorways wide enough to accommodate a wheelchair
- An accessible bathroom on the first floor
 The NYS legislature passed similar legislation in 2015 and 2016. Governor Cuomo vetoed this legislation twice, indicating his support for the concept, but stating it had to be done in the context of the Budget. Unfortunately, Governor Cuomo didn't include this in his proposed Executive Budget.Background: The disability community has long advocated for New York to increase the accessible housing stock across the State by incentivizing the use of "visitability" design standards. This includes basic accessible features, including: 

Last year, it was determined that there was a need to better understand the cost estimates for such a program. For this reason, the sponsors included a $1 million cap per year in aggregate to A.9303/S.6943. As the program would now be considered a pilot project, the State has five years to determine whether this cap is sufficient to meet the needs of the population.

Due to the high cost of home modifications, many people cannot afford to make changes to their homes to make them more accessible, or to move to a more accessible home. Most prefer to remain at home rather than move to nursing facilities or different, more accessible housing as their needs change. However, many are forced out because their homes are no longer safe or practical for them to live in. This tax credit will help to ensure that people with disabilities and older New Yorkers are able to afford these modifications and remain in their homes.
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An open letter to my [Former] Primary Care Physician

Dear Dr. R,

I think you may notice very soon (if you haven't already) that I have stopped coming to your practice. Or maybe you will never notice and/or won't care (or maybe will even be relieved to not have to handle my objections anymore). Youbs

However, I feel compelled to tell you why I had to change doctors for the second time in three years. Somehow I think you won't really care, although nowadays you really should.  Let me tell you why you should care about your patients and what they think.  First, there are so many doctors in our neighborhood.  We don't have to put up with substandard care in Central Queens, because there are at least 1,000 doctors within a 3-mile radius, from which we can choose.  Secondly, in this era of social media, it's easy to let everyone know of our experiences.  As a matter of fact, recently on Facebook, a woman in our neighborhood contacted me and asked for a general practitioner recommendation.  I promptly told her to stay away from you, at which time she informed me that she had just made an appointment with your practice and when she heard my feedback, cancelled the appointment with you and booked one with another practitioner on your premises.

Let me tell you the reasons I have changed doctors.  I had a very nice general doctor at the other end of Queens Blvd but since she had moved from spacious quarters at 97-77 Queens Blvd, which she shared with another doctor, she was less able to provide me with quality care.  Her exam rooms in her new location were minuscule and there was no room for my wheelchair. She came up with a solution to give me the last appointment on Wednesday and I had to wait for all the other patients to leave so she could examine me in her waiting area in full view of her [female] office staff.  Despite this being a semi-private arrangement, it still wasn't ideal.  But at least this doctor listened to me.  However, she often rushed me; I sometimes smelled the scent of a pizza which had been dropped off earlier by a pharmaceutical rep, and I could understand her hunger.  As a matter of fact, I had to fast before every appointment for my bloodwork and I felt like going in the back to steal the pizza; thankfully, my wheelchair couldn't fit in the room where the pizza sat. You see, despite her giving me an 11:45 appointment, she was always behind-schedule and by the time she got to me, it was usually about 2:00pm.  I stuck with her until she got sloppy with callbacks and her staff member told me she would call right back one afternoon, and I learned later that she had already left for the day and didn't receive my message about a medicine refill until three days later when she returned from her weekend.  I hate liars, so decided it was time to switch.

I went from the frying pan into the fire.  Even though your office is right around the corner from my apartment, I was worse off with your practice.  First, I quickly learned of  your unavailability between appointments, even to pharmacists.  My pharmacist -- whom I have been using for 30 years -- complains that it is nearly impossible for him to call for a refill on a prescription.  Once, he was so frustrated that he told me he had given up.  So I sent my aide in person; she waited nearly an hour in your waiting area before she could even get the message to you.  And then you told her I had to make an appointment to come see you in order to get the refill. WHAT?? I had just seen you three weeks before so why did I have to see you again just to get a refill?  You never return phone calls, and this concerns me.  How could I have any kind of relationship with a doctor who doesn't return phone calls?

I happen to be a wheelchair user and can barely fit into your exam rooms.  Your "practice-within-a-practice" used to be a furniture store.  The practice owner took a large open space and built exam rooms barely big enough for a doctor and her patient, let alone a wheelchair.  For an establishment which opened post-ADA [American with Disabilities Act of 1990], this is unacceptable.

What is even more unacceptable is the fact that you insisted on GIVING ME A BREAST EXAM IN THE HALLWAY!!  You insisted that "nobody is looking" and was extremely annoyed when I expressed my displeasure.  And, speaking of breasts, why did it enrage you when I asked you for a prescription that I could use for a mammogram at Columbia Presbyterian Medical Center?  I have been going there for the last 20 years, and they are the only facility with a WHEELCHAIR-ACCESSIBLE MAMMOGRAPHY MACHINE !!  And yet, when you handed me a prescription for a local facility and I said I wanted to go to Columbia, you were positively exasperated.  Did I ruin a kickback that you receive from the local facility?  If so, I am sorry because I know doctors don't make as much money as they used to. Oh, and I did have that mammogram appointment in March but when I sent my aide to your office for the prescription, you refused to give it to her unless I came in.  Funny how you told me after my last appointment "see that you don't come back before having your mammogram." and now you won't give me the prescription until I come in.  What???!!!

But, my own exasperation reached a peak three months ago during my last visit.  I waited TWO AND A HALF HOURS in the waiting area until you called me.  Then, not one gesture of apology passed your lips, for having an 11:30 appointment and not seeing you until 2pm.  Might I remind you that I was fasting because I was having blood work?  By the time you examined me, I felt like I was going to faint, and you asked me why I couldn't breathe strongly enough when you examined my lungs.  How many times have I reminded you that fatigue is a hallmark of ALS, as well as weak breathing.? Once again, you told me I should be blowing up balloons for exercise.  Blow up balloons?  You must be dreaming.

Anyway, so after you make me wait two-and-a-half hours and I hand you two pages of carefully-typed information I need you to know -- like request for the mammogram prescription and explanation of why I need to go to Columbia, and full reports on every medical appointment I have had since I last saw you -- you rudely put it in my file without reading it and asked my aide to come into the room.  Next, you told the aide "I need you to talk to me because I don't have time for her [meaning me] to type out her answers on the machine".  I was floored;  I had just waited two-and-a-half hours and not once did you apologize for the delay.  And now you insist on speaking to my aide, who only repeated the questions you asked and I answered.  When my aide noticed that most of your questions were answered on the paper I gave you and pointed that out, once again you were exasperated. That was the last straw.  Such lack of respect for a patient is unacceptable.  I may be in a wheelchair and talk with an assistive device, but it is your job to deal directly with me.  Two-and-a-half hours is way too long for a patient to wait, and don't think I didn't notice that Russian-speaking patients who had appointments later than I did, were taken before me.

I gave you every benefit of every doubt, but you proved to be disrespectful, arrogant and a proponent of "my-way-or-the-highway" doctoring of 50 years ago.  You are not God and I don't have to put up with your bad behavior in this day and age of choice.  I have chosen another doctor who -- by the way -- apologized for making me wait 30 minutes in her waiting room.  I have an email which I can use to ask her questions between appointments, and request prescription refills.  I have already done so, and my prescription was at the pharmacy a few minutes later.  I am very happy with my new doctor and will not hesitate to recommend her;  I will continue to dissuade people from consulting with you.

Sincerely,
Fern Ellen Cohen

Will I mail this to the doctor?  Probably not.  Because she will probably just stick it in my file without reading it, like she does with everything else I have given her.  She'll probably just think I died, or went to a nursing home.  Or maybe never notice that I'm gone, or maybe even heave a sigh fo relief that she doesn't have to deal with "the lady who talks with the computer".  Either way, she and I are done.

Lifetime Disability vs. Acquired Disability

I had a colleague, during my teaching career, who was an African-American lady about ten years younger than I.  We went to lunch one day and she stressed the importance of teaching her son -- then two -- about the civil rights movement, which even she was too young to have lived through, much less remember.  She said her mom -- who was also an educator -- made it her business to teach Oni and her sister about "the struggles" so she would always appreciate that the opportunities she enjoyed, were not easily come by.  As a child, I learned about the Holocaust, which was still fresh in everybody's minds, especially since I was born only ten years after the end of World War II and the liberation of the Nazi concentration camps.  There were people in my neighborhood, many of whom were classmates' parents, who had numbers on their forearms from the "camps".

What does this have to do with disabilities? A lot. When I just hung out in groups of ALS patients, we all had one thing in common: the same disease.  There are different forms of ALS, sure.  Some of us lost our speech, while some of us can speak; I still have use of my hands while some patients don't, and have to use eye-gaze machines to talk, and different switches to operate their wheelchairs - like head controls or even eye controls.  I am blessed with a slow progression, while other patients' symptoms progress at a faster rate.  But we all have one fundamental thing in common: we had a life before ALS.  Although we were diagnosed at different ages, and an increasing number of young people as young as 18-30 are being diagnosed, we all had able-bodied "normal" childhoods,  and most of us had several years of adulthood as well.  Most of us dated, attended our proms, got married and had children, and had relationships with our families without thinking about how or why.  

But as I mix in the larger disabled community -- most often as a consumer board member of Concepts of Independence -- I become acquainted with people who are disabled in a hundred different ways.  The one difference that stands out is the dichotomy between those of us with acquired disabilities [like Multiple Sclerosis, ALS or SCI -- spinal chord injuries], and those with disabilities that appeared at birth [like Cerebral Palsy] or in very early childhood [various forms of Muscular Dystrophy and Polio aka Infantile Paralysis].  Some polio survivors were in iron lungs before portable ventilators were invented, and many child polio victims were abandoned by their families and left in institutions.

I met a very remarkable woman at a fundraiser last September.  She came with her son who is now in his mid-30s and was diagnosed with a form of Muscular Dystrophy at age three, when his pediatrician noticed he was clumsy and not coordinated the way he should have been at his age.  Today, this man is an attorney who works for city government, but not without a mom who fought for his rights every step of the way in a pre-ADA [Americans with Disabilities Act] world.  She would not let his elementary school "dump" him in a special education class full of students with mental disabilities and mental retardation.  He became the first student in New York City to be "mainstreamed".  He graduated college and law school.  This mother says "I only did what any mother would have done".  Newsflash: I don't think my own mother would have had the strength to be the trailblazer this mother was.  And even today, my dad says all the time to me  "You can't [do that]".

Anyway, as I said before, this woman is remarkable.  But she commented to me at one point in our conversation:  "You will never know what it's like to be a disabled child.  You are lucky to have had a life before disability".  I agree.  I will never know what it's like to be bussed to a school over an hour away from home,  in a minibus full of kids in wheelchairs who have to be dropped off in different neighborhoods,  because there is only one handicap-accessible school in a whole borough.  Then again, disabled children today will never know that, either.  The post-ADA world is much better in the way of education.  Therein lies the comparison to my African-American colleague's son.  Children today with disabilities haven't lived through "the struggles" of their predecessors. Neither have I.  I never had to deal with as many businesses and buildings that I couldn't enter because of inaccessibility; nor have I had the experience of being stuck on my block because there were no "curb cuts" or even forcibly homebound because I could not get out of my building.

Nor will I ever know what it's like to be shunned by other children, whose mommies pull them away in the playground, as if disabilities were contagious.  Not to mention that able-bodied kids are bullied every minute if they are "different" in other ways. Able-bodied children have troubles too, just different ones.  And at the last meeting I attended at Concepts, some of my fellow board members were commenting about the new director of the Mayor's Office for People with Disabilities,  saying that he wouldn't be as effective as his predecessor, because the predecessor had been blind from birth and the new man in the job, has not been disabled his whole life.  The man sitting next to me [who is disabled from birth]  then said "There's a big difference between someone who has been disabled his whole life, and someone who hasn't" and the woman sitting next to him [also disabled all her life]  nodded her head.  

Is it fair to compare situations like this?  Sometimes.  Like when I watch those infomercials from St. Jude's Children's Hospital where Marlo Thomas introduces us to babies and little children going through cancer treatments,  I think "There's nothing worse than this, especially if they die.  There is no loss worse than watching a child suffering and then burying a child".  And yes, having a disabled child is the toughest, especially before ADA.  It doesn't mean I can't be effective as a spokesperson.  And should it have been a criterion when choosing the MOPD director, that the successful candidate be disabled from birth or childhood,  in order to empathize?  

Part 2 Aug-Comm Eval + Independent non-chain restaurants in Rego Park, Queens

Independent non-chain restaurants in Rego Park, Queens

Read my latest article!!

As for the second part of my  augmentative communication [aug-comm] device evaluation, at Rusk Institute,  this time I met with Hollie Cohen who does the actual evaluation for the machine.  First we looked at my iPad, and she saw I had Verbally downloaded as a free app.  This is a program developed by two Indian brothers for their mom,  who had lost her speech due to ALS.  This program is even better than my Mercury.  Verbally has word prediction like the Mercury, which means that, when I start typing a word, the machine comes up with possibilities of words that it thinks I want.  But Verbally goes one better:  when I type a word, it comes up with options which predict the NEXT WORD.  Example: I type "I" and it gives a word choice "am", Or I type "supposed" and it gives me "to" and "that"..... really amazing.

There was one big problem with "Verbally" and that was the voices.  There were very few choices, and it was so soft and low that you could hardly hear what the machine was saying.  So I have been using it and people have been reading my messages.  Not the best way to use a speaking device,  but I love the portability of the iPad, and of course, when I am out on the road and on Access-a-Ride, I can read my email, play games, and otherwise amuse myself.

So when I met with Hollie, I expressed my frustration at this shortcoming with Verbally, and she showed me her version [on her iPad], which had been upgraded for $100, and it had different voices, which had a higher volume we could hear, and the capacity to program phrases which could be saved.  She also showed me other apps which were cheaper, and better than the free version of Verbally, but not as good as the upgraded Verbally.

On another subject,  I often say that nobody knows or cares about accessibility until someone close to them becomes disabled, or someone like me fights for accessibility, as I did in my co-op.  Before 1990, businesses and public places were not obligated to provide accessible entrances, restrooms, etc.  And I can recall being at travel agent functions after 1990, and listening to travel agency owners whine and moan about the expense of putting in a ramp, or making other accommodations to make their businesses accessible.  My friend Louise learned through knowing me, how important accessibility is, and became concerned about the lack of a ramp at her church -- St. Luke's -- in Forest Hills, Queens, so she set the wheels rolling a few years ago to build a ramp.  They had to pass through the local organization which governs the historic area where the church is located,  and of course draw up plans with a contractor who was familiar with accessibility.  Luckily they didn't have to raise the funds because someone had left money to the church after her death.  So this week, they began to build the ramp, and Louise is relieved.  They don't have to wait until someone sues the church.  They know the worshipers are not getting any younger.  My point: if you own or are involved with any kind of establishment, make it accessible.  It's the right thing to do.  And people with disabilities should be independent, and not rely on someone else doing everything for them.  People with disabilities are out of the house and in the community, and should be able to patronize every kind of establishment.

Updates:Budget Cuts Affect Nassau Able-Ride and People With Disabilities in General

Sadly, I received notification that due to budget cuts, Nassau Able-Ride will no longer offer door-to-door service.  They are only required by law to provide service to people with disabilities along bus-routes, so that's what they are going to do.  This means that there are whole towns in Long Island that will not have Able-Ride paratransit service.  I'm happy to be living in New York City, where Access-a-Ride still offers door-to-door service.  It enabled me to go with my friend Judy to the kickoff party for the NYC Walk to D'Feet ALS at Yankee Stadium, and to the baby-naming of my friends' babies in Bayside, right on the border of Nassau and Queens.  But I would not have been able to go to my traditional New Years Eve party at my friend Nancy's house in Great Neck if not for the connection to Able-Ride.  This is very sad news for people with disabilities in Nassau County who don'thave use of a wheelchair van.  Budget cuts are hurting everyone.

Budget cuts could really hurt me in a big way too.  I am getting a visit from a nurse who works with NYC home care [CASA] next weekend, and she is going to evaluate me for continuation of home care.  Right now, I have two aides every day, on a "Split shift" of twelve hours each.  I am not likely to lose that, but they are not giving that arrangement to new applicants.  Rather they want to give everyone a "live-in" arrangement. In that plan, an aide lives in the whole day, usually for 3-4 days in a row. However, they are only paid for 14 hours.  This means that the aide is around in case there is an emergency in the night, but they are "off-duty" for eight hours.  They would rather work a 12-hour shift and go home, rather than have to hang out in a patient's house. I am sure that the aides I have now will refuse to do this.  So, if I am forced into a "live-in" aide situation, I am looking at a whole new set of aides.  That will not be fun, so I am going to have to convince this nurse that I need the two 12-hour shifts, without seeming so dependent that she will have to put me in a nursing facility.  It's a slippery slope, because I can do most things for myself, except I can't get into the kitchen, so the aides have to get everything for me.  So they would have to leave certain things within reach.  And since I don't really have proper sleeping arrangements, I would have to get an inflatable mattress at best.

On other important subjects, Lon Cohen says I can publish a book through Lulu with no cash outlay.  I was fitted for a new wheelchair, so I will get that in a few months. The new season of "The Tudors" has begun, and this season of "The Amazing Race" is coming to a conclusion.  I am going in May to see the "spasticity guru" as he is called by the Cornell ALS/MDA.  He is at the Hospital for Special Surgery.  The pollen count is also killing me, but when I feel I have to take an antihistamine, I can count on falling asleep for a few hours.  I love spring, but it is a double-edged sword for me.  I am comfortable inside with the A/C going.  I remember my beloved, now-retired, allergy doctor Sidney Rand telling me "Always take a vacation at the beach and never in the country.  Take hikes by the ocean on your days off, and never in the woods."  I do always feel best at the beach, far away from pollen and ragweed.  I always imagined myself retiring to a beach house to do my collages and my writing.  I will have to settle for an air-conditioned studio apartment in Queens. My biggest challenge is the TV soap operas in the background all day.  I can't help this, because the aides have to be amused too.

An Almost-New Wheelchair

It's Christmas Eve and I am getting ready to go to my family tomorrow for the day.  I am honored to be invited to a New Years Eve party on Long Island, but there are challenges getting me there, so I might not be able to go.  The lady willing to drive me has an SUV with no back seat, so I would have to lie reclining in the hatch.  If you are familiar with ALS, you know that I can't breathe in a reclining position.  So I would need someone with a regular car in which I can sit up in a regular seat.  Access-a-Ride does not go that far across the border into Nassau, and the Nassau Able-Ride would connect at Long Island Jewish Hospital, but doesn't operate after midnight, so that takes care of the return trip.   To rent an ambulette would be prohibitive.  There was a man who came up to me recently and gave me his card; he runs a wheelchair-accessible limo service.  I'm sure it's expensive, but I will see if I can find the card.  It's not easy being disabled and not have a wheelchair van.  Those of you who do should count your blessings.

I received my modified wheelchair and got to give back the horror show loaner that was fit for a 350-pound man, and neither reclined, tilted, nor elevated.  Wow, if ever I felt my hands were tied!!   I couldn't nap, which was a real hardship, and I could hardly reach anything!

Enter my modified wheelchair, which has power footrests, so now I can elevate my feet to alleviate the swelling.  It also has pads and guides to help me sit straighter in the chair, rather than leaning over to one side and it keeps my legs straighter rather than splayed.  I look less freaky and more like a human being.  However, I am higher, so I've had to get used to that, and the seatbelt that I recently paid $46 out-of-pocket to have installed, is too short.  So when the wheelchair company comes after the beginning of the year to install my new tires, I hope they will be able to install a longer seatbelt.

Every five years we are entitled to a new wheelchair, but I am not due for that until 2011 because I got this chair in 2006.  However, I am distressed to learn that MDA had to eliminate the $2000 grant to first-time wheelchairs.  Without that, I never would have been able to get my chair, because the co-pay on a $25.000 wheelchair was covered by this grant.  Every charity and non-profit agency has had to budget and remove certain services in this recession  Both MDA and ALSA have had to eliminate their transportation program that gets many patients to the ALS clinics.  Just another casualty of the economic crunch!!

Thanks, Gripes, Wallet Followup, and Other Frustrations

First of all: Things I am thankful for:
Sprintip which allows me to do relay phone calls.
My aides who have stuck with me for years, when there are a lot of easier cases they could be working on, like nice little old ladies who really don't need too much help, just someone to be there.
My family, who invited me for Thanksgiving dinner
Louise, who comes with me to support groups and comes over to help with bills.
Judy, who comes to visit and take me to Starbucks, or further if weather permits, and who came with me to see "Ragtime" on Broadway a couple of weeks ago.
My dad, who helps me make ends meet with grocery money, and a new fridge he bought for me this past summer.
My parents who taught me to do things for myself and not depend on others, an independent spirit which got me through this past week, when everybody was so busy, and I needed to make phone calls to replace everything that was in my wallet.
Mary Knudson, whom I have never met, but who has been there for me.
Maddy DeLeon, who made some frustrating phone calls for me trying to track down my wallet, and who was willing to drive to Brooklyn's armpit to retrieve it for me. She is my angel in other ways too.
If I forgot anyone, please forgive me
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Okay, if you don't want to hear the gripes, and think I come off as bitter and hostile, stop reading here, because the reality is that life with ALS is full of frustrations and dealing with stupidity.  But please read on so you can see that I am not griping for me, because I am rather strong and I can take it.  But think of the little old people who don't question anything, and any other people who don't have the resources and/or presence of mind that I am lucky to retain.  One can only imagine the damage done by people who are in positions they should not be in, because they are either uncaring, incompetent, or just plain ignorant or stupid.  Or maybe they have been in their jobs so long, underpaid and overworked, ready to retire a long time ago, but stuck in a job they resent or hate, and know that in this bad economy, they have few options.  Whatever the reason, the sufferers are the people who are in most need of people who care, have the answers, and are conscientious in their jobs. Not to mention that any of you reading this, could become disabled and/or sick, and could have to deal with these frustrations yourselves.

First, Access-a-Ride and their eight sub-contracting companies.  This paratransit service in NYC is wonderful when it works, which I must say is often, is the best thing to happen to people with disabilities.  It is door-to-door service anywhere within the five boroughs.  And it even connects with Nassau Able-Ride, so you can even go to Long Island. When it is efficient, it is heaven.  If you are in a wheelchair, or unable to climb steps, you can use the lift.

But they have their problems, and this month it has been the phones.  I reached home on Monday from an appointment in Manhattan, at 4:15.  The Access-a-Ride lines to book a trip, close at 5:00.  I have often made bookings this late, even at 4:45.  I had to book my trip for the next night's ALSA support meeting.  For the next 45 minutes, each time I [or the relay operator] dialed, we got a recording "your call cannot be completed as dialed.". At 5:05, just for the hell of it, I dialed and got right through, but guess what?  They don't take trip reservations after 5:00.  So, I wasn't able to go to my meeting at all.
Representatives from the DNNYC,  [which is a wonderful organization to get involved with, if you are disabled and live in NYC], told me that AAR is going through some issues with their phones, exacerbated by internal struggles which have left them understaffed. I hope they resolve these issues quickly, because so many people are dependent on this service, and I wouldn't be able to go to a weekly appointment and monthly support groups without them.  And forget about any enjoyment like theater or visiting people.

This turned out for the best, since I woke up Tuesday morning with a raging cold.  Next rant:  my apartment had been like an icebox for days.  So I called the super, who said there didn't seem to be anything wrong.  But then he opened the living room radiator to fnd that the valve was bad and there
was no heat coming through.  He fixed it within an hour.  One of the better things that happened this week.  I really like my super.  What this is going to cost me, I will find out when I see the maintenance bill. And people with high blood pressure can't take decongestants, so I am pretty miserable, although getting better.  I just pray it doesn't turn to pneumonia.  Using the cough assist machine   can help with that.


And, speaking of AAR, one of their sub-contractors, who told me they had my lost wallet, and to which I took AAR on a cold Saturday morning to retrieve my lost property, claims they don't have itafter all.   My friend Maddy made a few followup calls, and was willing to go there again once they said they had it.  But, alas, my wallet has slipped into another dimension.  No one was available to assist me that weekend.  I had no money, no ID, no credit cards.  I went to my local Citibank branch, and got a temporary ATM card on Saturday afternoon, and waited for the permanent card, which I have since received.  All weekend long, and into the beginning of this week, I managed to report everything lost and requested replacements, either by relay calling or websites.  With the exception of one thing: my Medicaid benefits card.

So here's the most ridiculous frustration of all.  My Medicaid case worker is the epitomy of the person I described above.  He has made so many mistakes, I couldn't list them all, right down to sending a letter threatening to take my homecare away due to my "refusal to cooperate" with the necessary forms.  I had submitted the forms to his office but someone neglected to tell hhim about that.  I can only picture some poor frail octogenarian getting that notification.  Anyway, if you see a compact car with the personalized license plate "Mambo Man", wave to my Medicaid caseworker, [I'm not kidding about this].  So I called Mr. Mambo Man to ask him to help me get a replacement for my Medicaid card and he said "you are not on Medicaid anymore.  You left the system".  Huh?  This was news to me!  So I told him he must be mistaken, and gave him my social security number.  He admitted he was mixing me up with another Cohen [probably thousands of Cohens].  So then I asked him again how I go about getting my Medicaid card replaced, and he said "call 311 [aka "citizens hotline"]  This is a number to report heat outages, ask touristy questions, and the like.  I was puzzled, so he said "There is an office on 34th Street, and I will give you a phone number but they never answer the phone".  That didn't sound useful at all. Then he added "there is a procedure to follow, but I am not familiar with it, so call them.  So I scratched my head, thinking "shouldn't my Medicaid caseworker know the procedure for replacing my card?  hmmmm....

So, for those of you who tell me I am bitter, hostile, ungrateful, and negative......don't even imagine how these things are for me to deal with.  Think of your great-aunts and uncles, grandparents and frail neighbors dealing with this stuff.  And even think of the young-ish person like me, who has to deal with a devastating diagnosis, total dependence on others, loss of abilities, and in the case of something like cancer -- pain and weakness from treatments or surgery -- and imagine having to deal with these frustrations on top of an illness.  Maybe then you can have some empathy for the frustrations of bureaucracy.  And now they come up with so-called new guidelines for breast-cancer testing.  Don't get me started...........

RIP Edward "Ted" Kennedy

This is a few days late, but through all the memorials for Teddy Kennedy over the weekend, I learned what afriend he was to people with disabilities. In fact, there might not be an Americans with Disabilities Act, if not for Senator Kennedy, and he was a driving force behind the Family Leave Act, among others. I have said many times how the ADA has made my life so much easier, and someone who was disabled before 1990, can really see the difference. We have a way to go, because now members of Congress are pushing the envelope toward the concept of "visitability", which is the concept that everyone's home and every building should be accessible whether or not there is someone who lives or works there, but for the benefit of anyone who has to visit. I can't tell you how many times people with disabilities are invited somewhere, only to find out they can't attend due ro the inaccessibility of the venue/home

Anyway please read my tribute to Senator Kennedy by clicking here.

Update May 22, 2009

I feel like I have been running around the past few weeks, but it has been a great few weeks of going places and seeing people.

On Mother's Day, I took my caregiver Ellita to Applebee's for a Mother's Day lunch. And one Friday night Judy visited and we went to Anna's on Queens Blvd. Any opportunity to get out of the house and see people, is so welcome! I am grateful for the fun I had this spring. The three Saturdays in Valerie's van, two to the beach, were glorious!

On May 11, I was invited to a research reception hosted by MDA-ALS Division and Wings Over Wall Streetat Chelsea Pier. One of the best parts was utilizing the hour before the event started to explore the pier, which I hadn't visited in years! But I couldn't believe how nice this reception was, and how everybody from MDA and Wings treated me with such attention and caring. I felt so comfortable.

I also attended my annual shareholders meeting at my co-op. I had to laugh when the management company talked only to my aide -- "tell her to sign here", "ask her...etc etc...." the ignorance of people toward the disabled still makes me frustrated, but I don't express myself too much anymore because a) it's an exhausting waste of my precious energy, b) they never get it anyway, and c) when I try to to talk it makes it worse because it scares them, they think I'm mentally challenged, or they think I'm crazy, or all of the above, and if I write on my board, it takes too long. I rely on the aide or friend who is with me, to say "She can hear you; please speak to her", and I am so grateful when that happens. Caregivers and friends of people with disabilities have to advocate for those who can't do it themselves, And the second indignity, if you will, was that my ballot was already signed by the co-op president. "Hahahaha" I said to myself, "I'm here, and I am voting"

May 16 was the 2nd annual Manhattan Walk to D'Feet ALS along Hudson River Park from Charles Street to West 54th Street. Despite rain in the early morning, and dreariness at the beginning of the walk, it turned out to be a beautiful day. I had two new members of Fern's Fighters -- Jessica Aguilar, one of my former AES students, and her friend Jennifer. After the walk, we went to grab a bite. This was a reality check, especially for Jessica and Jennifer. We went to Tenth Avenue between East 56th and East 57th Street. There must have been about 10 reasonably-priced places to have lunch, and I could not get into any of them, because of steps and no ramp. A Boston Market looked promising because they had about 5 steps going up and a wheelchair lift. But, as usual in places with lifts, the lift "wasn't working" , which usually means a staff too lazy to get the key and operate it, or just too lazy to report it broken and get it fixed. The thing with the ADA [Americans With Disabilities Act], is that there is nobody going around to check that retail establishments are complying; they wait until someone puts in a complaint. I may send an email to the corporate website, but I am not about to fight local eateries in a neighborhood that I don't even frequent. So the others went inside to eat, and I waited outside while Ellita got me a takeout meal for later. But I kept thinking of a scene from a movie that I saw recently that took place in the South in the 1930s, where a singer was touring, and couldn't go into certain restaurants that wouldn't serve African-Americans. So his white band members went in to eat and brought food out to him. Hmmm, do you see a parallel here?

One disappointment was that, for the first time in four years, I could not join the Ride for Life, because they did not come within the five boroughs this year. They stayed in Long Island, primarily in Suffolk County. My plans to meet up with them in Nassau County by an Access-a-Ride and Nassau Able-Ride had to be scrapped because of an uncertain ending point and time. People with wheelchair vans don't know how lucky they are. Those of us who rely on public paratransit, though we are fortunate to have it in this area, have to give times and places for pickup; we can't be spontaneous at all.

My quarterly visit to the ALS Clinic at Beth Israel was positive. I am pretty stable -- legs pretty useless, but arms even stronger since physical therapy. So the doctor wants me to continue PT, since it is benefiting me. I have to get my braces adjusted because they are cutting into my feet and killing me. And the shoes I wear with the braces are very stretched out, adding to the problem. So off I go to buy another pair of grossly overpriced shoes. Oh well.......

Nancy O'Dell, Outings in a Wheechair Van, I May See the Beach

Nancy O'Dell, co-host of TV's "Access Hollywood", lost her mom recently to ALS. Despite her mom's passing, I am hoping Nancy will continue to fight for an ALS cure. Read more about that, here. The dilemma with ALS is that often after the death of the patient, the family and friends seem to pull away from the ALS community. Except for the small percentage of "familial" ALS cases, I guess most people whose lives have been touched by ALS, feel that the disease will probably never touch their lives again. So they go back to raising money and awareness of cancer, AIDS, or some other disease that is much more likely to affect them or a family member or friend. They prefer to forget the whole ALS experience. And, since most ALS patients die within two years of diagnosis, there isn't a lot of long-term follow-through.

The best possible arrangement an ALS patient can possibly have is a wheelchair van. But not everybody can have this, because either they can't afford it, or they don't have a caregiver who can drive it, or both. In my case, I can't have a wheelchair van for both of those reasons. And that is why I have to depend on Access-a-Ride, which must be scheduled a day in advance, and can be terribly unreliable, or public buses, which can be inconvenient. In my case I also don't have a lot of companions who have the time to spend going places with me, while putting up with those modes of transportation.

Last Saturday, I had a special privilege. My friend Valerie, who unfortunately lost her husband to ALS last fall, picked me up in the wheelchair van she still had, last Saturday. Everyone knows two of my favorite places are Trader Joe, and the beach. Well, Valerie, her 6-year-old daughter Layla, and Louise and I, went in the wheelchair van to Trader Joe, but the rain ruined our beach plans. What a gift to be able to pull into the van without having to do a difficult transfer, ride where we wanted, and when we wanted, on no set schedule! Just a laid-back afternoon of Trader Joe and snacks at a Chinese bakery in Forest Hills.

The good news is that it is going to be 70 degrees today, and Valerie is going to pick me up again for a trip to the boardwalk. I have not seen a beach in three years, and I have been very depressed about this! By the way, disabled people can actually go onto the sand at Long Beach, Brighton, Coney Island, Rockaway, and Orchard Beach, due to mats they have installed. For all ththose skeptics who don't believe me, or who don't think a wheelchair-bound person can enjoy the beach, check out this article or this one, with great pictures
and also a listing of exact locations for the mats. I might add that Forest Hills is one of the many accessible stations of the Long Island Railroad [LIRR], which goes to Long Beach and Jones Beach [the latter with a bus connection from Freeport] For the webpage to look up a list of accessible LIRR stations, click here.

Since Valerie has to return te van this week, today will be my last shot at going in such style. I am really looking forward to it!

Update April 4, 2009

Louise brought me to see "33 Variations", a play about a musicologist who has ALS. It was my first time in a Broadway theater since late 2003. It was exciting to me to be in a Broadway theater again, and even more exciting still to see the 71-year-old Fonda in her first Broadway play in over 40 years. There is no excuse for a wheelchair-bound person to stay away from Broadway. All the theaters are accessible, and there are wheelchair spots in every theater. You can book wheelchair spots online or by phone, and as a wheelchair user, you sit in the orchestra section, and your companion gets a seat as close to you as possible. And the best part is that you both [wheelchair-user and companion] get the lowest-priced ticket. I also joined a program through the Theater Development Fund [TDF], called TAP for people with disabilities [PWDs], which sends lower-priced offers every month. So there is no reason for PWDs to stay away from Broadway, or museums or other attractions for that matter. They are all accessible, except for the Lower East Side Tenement Museum because of the landmark status of its building.

One weekend when Judy could not come, Louise came over to take me to Starbucks. My friend Andrea came one Saturday, stayed the whole afternoon, and really brightened my day. My former student Jessica Aguilar came last Sunday to help me with some reorganizing that really made a difference. And my weekly visits with Judy are always something I look forward to. I still need to measure the width of the hallway leading into the bathroom so I can hang curtains from a tension rod. We had to take off the bathroom door so I can get up to the doorway for my once-weekly trip to the bathroom. And, I went with Judy to shop for a cotton rug for the bottom of Chelsea''s cage, but all we saw were rag rugs. Then Debbie sent me a rag rug, which we "installed" yesterday. Chelsea slept in her litter box all night. She will have nothing to do with the new rug. It probably has to do with the nubby nature of the rug. Her own cotton rug is in the laundry, and there were no rugs like it in Bed, Bath, and Beyond. So my aide and I switched out a rug that she loves to lay on, which was on the floor, and put the rag-rug on the floor. Problem solved!

I have my portable vent. on a chair when it is recharging; otherwise, it is on the back of my wheelchair, but it needs two people to put it there. The purpose is to enable me to go out for up to six hours when I am totally vent-dependent, but right now, I use it for when I am out and feel short-of breath or sleepy from not enough oxygen. And the ventilator has to be taken on and off the wheelchair to be recharged. Today I am mostly using the vent [non-invasive] at night. This is, of course, next to my cough-assist machine. So much equipment!

By "vent", I mean NIV [non-invasive vent], which goes onto my nose and/or mouth with a mask. I use a Bi-PAP at night, which is similar to the C-PAP that people use for sleep apnea. My "vent" is also a NIV. This is not to be confused with a tracheostomy and mechanical ventilation, which some patients opt for, when NIV no longer works. This is considered life-support and is a big decision. Stephen Hawking is on mechanical ventilation. In pictures of the famous physicist, you can see the tracheostomy tube coming from his throat. Most people who opt for this, have a ton of money to pay for care, which is not covered by Medicaid or most insurance plans. A patient on mechanical ventilation needs either trained nurses and/or trained family caregivers to be present all the time, because the patient can never be alone. In the absence of that, the patient must live in a nursing home. Since I refuse to live out my life in a nursing home, I have a health-care proxy that instructs that I am not to be trached and mechanically-vented. There are many people I keep in touch with, on mechanical ventilation, most of whom have a spouse who does most of the care, and nurses to fill in, even children who can do the job. Many of them run fund-raisers throughout the year to raise the money to pay the bills. With stem-cell research being much more on the horizon, a cure or improved treatment is more imminent, so they want to go on as long as they can. As for the patients I correspond with in nursing homes, they are not happy. They say the staff doesn't understand ALS, are especially mean to patients who can't speak, and are especially isolated because their friends and relatives are uncomfortable visiting nursing homes. From my understanding, good nursing homes with compassionate staff are few and far between. I even correspond with a patient in a nursing home where the staff never brushes his teeth. For Christmas, all he wanted was someone to brush his teeth, so a friend came over to do just that.

On the other side of the spectrum, I know of a man in Manhattan who is on mechanical ventilation and lives with his wife and a live-in aide [paid privately]. He has a push chair, because he can't use his hands anymore, and so he can't drive a motorized wheelchair. Every day he goes out -- to the park, to a movie about twice a week, out and about, etc. Every situation is different. In his case, he wrote a book totally using a computer that works with eyebrow movement, because his eyebrow is the only thing he can move. He uses the book sales [the book is called "Not in Kansas Anymore"] to raise funds for his care. He is the epitomy of strength and resilience. Most people with ALS will tell you that before their diagnosis they would have said "I'd rather be dead than live like_____." You can fill in the blank with any scenario/phase of ALS. For me, it could have been "I'd rather be dead than not be able to wash my hair three times a week/take a shower daily/not be able to go to the beach/not be able to drive, etc. etc. BUT when you get to each stage, you adjust, you accept, you are happy to be here.

Everyone Needs Emotional Safety

ferncohen.com
By now, everyone is familiar with the proposed subway, bus, and railroad fare hikes by the MTA. But did you know they are also planning to double Access-a-Ride paratransit fares too? This is crazy because most disabled people are below the poverty line, and are the most underemployed segment of the population. So, if this fare ike goes through, a round-trip of $4.00 will now be $8! This is a lot of money to some disabled and/or elderly people, and will force a lot of paratransit into isolation and house-boundedness because they won't be able to afford to go anywhere. But Manhattan Borough President Scott Stringer is earnestly fighting this, alongside Senior Citizen and Disabled advocacy groups. Let's hope his efforts are successful. Stringer has been holding hearings and town hall meetings on the subject.
A fare hike on paratransit will be a hardship on clients, myself included.

Everybody needs a safe place to let off steam and vent, without being judged or preached to. And everybody needs a place where they can express disappointments and heartbreaks, and - yes- even anger, without friends and loved ones getting all sensitive thinking they recognize themselves, and either getting on the defensive, or getting all angry and preachy and coming back with scolds like "you know, there are people worse-off who don't complain" or other criticisms. Worse yet are the ones who preach "you should keep a gratitude journal" or "you should find something positive". Everybody, sick or healthy, has the right to some anger as long as it is vented in a healthy way. The definition of "depression" is "anger directed within" or anger "held in". Many people who suffer from depression are people who never seem to get angry. However, I am reminded once again that everybody has to find out where, and to whom it is "safe" to let out true feelings, and often it is only to people who have been through, or are going through, the same experience. Anyway, we know there are people worse off than we are, we do think about positive things, we are grateful for what we have, etc etc. I for one, don't sit around in a constant state of outrage. But I've decided to take some of the raw emotion and express it privately, in safer places. I have found out that a blog is not safe at all. And a difficult lesson I had to learn was: sometimes the very people who encourage with "You go girl!" and "we love your feistiness" are the very ones who turn on you later, saying "you're just too angry". I had a former neighbor who was also a close friend, end our association last month for this reason. Here was a person who was most supportive and encouraging. Now the friendship is over. I will never trust anyone again who tells me "You go, girl!". And of course I begin to wonder "is she just able to verbalize what everyone else is thinking?" She claimed in her comment that people weren't coming around anymore because of my "attitude". Maybe this ex-friend just spoke the truth, and once I got over the shock and hurt, I was actually grateful. I remembered that saying about the truth setting you free, etc etc. So true!

One thing I have learned is how unimportant it is to accumulate "things" that are no longer useful to me. Dust is an issue for my breathing, and the aides are not obligated to do more than light housework. I was shocked when one of the aides swept under my bed and behind my microwave and pulled out dust balls the size of animals! The aides are not supposed to do heavy cleaning, so I can't force them to do this. When they do, it's a bonus. So I think I will have to hire a cleaning person at least once a month to move furniture and do heavy cleaning, OR pay one of the aides extra to do a twice-monthly deeper cleaning. This week I also donated my remaining craft supplies and stereo/boom box that hasn't been used and has been collecting dust to the Brooklyn Center for Independence of the Disabled [BCID]. It felt great! I need to unload some books -- a very hard thing for me to do -- which are some of the worst dust-collectors! But, on the other hand, nobody can really appreciate the pain of getting rid of these things. It's like watching parts of me die, because it's an admission that I no longer need these things because of the things I will never do again. List go around in my head-- I will never again: go on a date, do crafts, go to a gym, travel, go to a concert or live theater, etc. These are things disabled people can do, but I can't do because of my circumstances of being alone. So every time I look at something at home and say "I haven't worn that, or used that in 4 years, and probably won't again", it's a part of my life dying.

I am kind of cocooning for the winter. I am afraid of getting a serious infection so I am taking care. I actually received an invite, through a disabled organization, to attend one of the inauguration parties. But without a hotel room and a ticket to the Inauguration, it really becomes impossible. Hopefully in May, I can go to Washington with ALSA? I really want to be involved in activism and make a difference.

I Helped Someone! YAY!! Access-a-Ride [almost] Going to LI

ferncohen.com
The other night I was at the ALS meeting/holiday party at Beth Israel and I was approached by the mother of a patient who still works as a physician [and the mom goes with her]. Well, they say that they learned from my blog about the accessible taxi dispatch program, and tried it because their wheelchair van is in repair. They were pleased with the service on the first leg. The second leg there wasn't a taxi available in time, so I think they took the bus, because they didn't want to wait too long. But it's nice to know that I helped someone through this blog.

Also, Access-a-Ride is going over the Nassau and Westchester border 3/4 mile to Great Neck, Atlantic Beach, N. Hyde Park, etc....so there are more options! But DNNYC is fighting the fare-doubling promised by the MTA.

Senior Tour With No Accessibility -- Duh?

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This is an email I received today from my friend Lora Frish:

This morning, December 10,
I went on a tour of Gracie Mansion with other
elderly people from the Van Cortlandt Senior Center. There was one
person with a walker and several with canes. The tour was on two
floors, but the elevator was unavailable. The people who couldn't
climb the stairs had to wait in chairs on the first floor for the rest
of us to finish the tour. The elevator should be available for tours.

D-u-u-h-h???? A bunch of seniors are coming......Now, should the senior center pre-arranged by inquiring at the time of booking? I don't know the level of expertise and experience of whoever arranged this tour, but someone at Gracie Mansion, upon hearing a bunch of seniors were coming, might have made the elevator available?

Word to the wise for anyone reading this who may be in a position now or in the future, to arrange events for seniors and/or disabled. Check on accessibility.

Accessible Taxi Dispatch Program Needs Users

ferncohen.com
Almost two decades ago, disability advocates went to then-Mayor of New York City, Edward Koch, to obtain his support for the proposed program to make New York City's public bus system wheelchair-accessible. To everybody's astonishment, Mayor Koch, who had a legacy of liberalism and progressivism, was not supportive. The reason Mayor Koch objected to the accessible-bus program, which would equip each bus with a motorized wheelchair lift, was not because the mayor was not sympathetic toward people with disabilities [PWDs]. He objected to the costly modifications because he believed PWDs would not use the accessible buses, and the expense would be for naught. Moreover, he was afraid that able-bodied riders would object to the extra time spent to get a PWD boarded, and would resent the new system, and the PWDs.lifts ta Koch feared the resulting backlash of able-bodied riders venting anger toward PWDs would be counter-productive, and cause increased alienation and isolation of PWDs.

Several years later, Ed Koch had to admit that he had been mistaken. The accessible-bus program became a success. Today, every MTA New York City bus is equipped with a motorized ramp. It takes very little extra time to board a wheelchair, and the able-bodied riders rarely exhibit annoyance. As a PWD myself, I am amazed at how efficient this system is. At the beginning, I understand there were growing pains -- broken lifts, or bus drivers who claimed their lifts were broken out of laziness or resistance -- often leaving PWDs in wheelchairs waiting for several buses. But I have had nothing but efficiency and friendly, gracious bus drivers.

Now, there is a new program in place. New York City has an ever-growing fleet of wheelchair-ramp-equipped taxis, pictured at this link PWD advocacy groups are trying to get more fleet owners on board to replace old taxis with newer accessible models. Formerly, it was very difficult to find an accessible taxi to hail from the street. But now there is a dispatch program in place. A PWD can now call 3-1-1 and ask for the accessible taxi dispatch. The call will then be routed to an appropriate dispatcher, who will send out a ramp-equipped taxi. According to a statement from the Disabled Network of New York City [DNNYC] this week "Arguments against adding more taxi and livery services for riders with disabilites have long been based on the low numbers of people using existing services. Based on the figures available, taxi and livery drivers assert that providing taxi service to PWD's cannot be profitable. Ridership of PWD's for the recently launched wheelchair accessible taxi project is below projected levels." So, in order to make this accessible-taxi program viable and profitable, PWDs have to make a concerted effort to use the accessible taxis through the new 3-1-1 dispatch system. Eventually, New York City hopes to be like London, England, a city where every taxi is equipped for wheelchairs.To read more about the Accessible Taxi Dispatch Program, click here.

Co-op Apartment For Sale in Accessible Building in Rego Park

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OK, now this is really funny!
I must admit I laughed hysterically when I saw this.
For those of you who just began reading this blog in the last couple of years, here is a little history.
Way back in 2004, while I still served on the Board of Directors of my co-op, I brought up the issue that the door in the basement was very difficult for someone in a wheelchair or using a walker. To make a long story short, I quit the board and began a 21-month-long battle, with the NYC Commission on Human Rights at my side, for an automatic door. There were other things, but we didn't get them, and I didn't feel up to going to court. Because one of the things we didn't get was a ramp into the lobby, all building functions are now held in the basement. Unfortunately, I still have to brave the elements when I wait for Access-a-Ride" because they won't pick up on the side of the building, where I have to exit. At the time I initiated the process, I had no home care, so often I had to wait for another neighbor to come through to open the door for me [risky at night].

Anyway the door is not the best and breaks down a lot, which angers some of the neighbors. Also, by the time the 21 months was over, I had aides to open the door for me, although I am not the only disabled person in the building. There has been some angry backlash from neighbors who feel the co-op should not accommodate me due to expense and the shoddiness of the door. I won't beat a dead horse, but when I saw the following posting in the yahoo group DNNYC [Disabled Network of NYC], I was intrigued. .... It advertises a co-op apartment for sale in Rego Park, and promotes it as good for wheelchairs because the building has automatic door-entry. So I clicked on the link for more information, because I was curious to see where this apartment was, and guess what! I won't tell you; I will let you click on my link to the posting, and then let you click on the link in the posting to see more info on the apartment which was advertised on a list for people with disabilities [PWDs]

Election Day

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Got back a little while ago from my visit into the Land of the Living. I love just sitting and people-watching, not always from the window of an Access-a-Ride bus. And to talk about something other than ALS. But I accept that my apartment is not conducive to entertaining. It's embarrassing to have a commode and certain equipment in full view. Two of my former students came to visit me and cook me dinner, and I didn't think about how inapproriate this place is for visitors.

And leaving the apartment seems to make others feel, well, a little uncomfortable. I thought my mission was to be out there and show that one can live with ALS, but I guess it didn't work out that way. This disease makes other people very nervous and confused. I am getting tired of hearing how people don't know how to act around an ALS patient, and what a frightening disease it is for people to look at. And most of all, I am sick of hearing "well, what is he/she supposed to say/do?" when I relate to other people that someone else was disrespectful or rude to me. All I can say is "learn, people!". And it would be nice if "friends" could help set people straight, and it can be done nicely. Yes, it's not easy to be around me;it's even harder to BE me. If someone asks you questions about me, or refers to me in the third person, with me sitting right there, would it kill to say "you can talk to her; she hears and understands". Recently, when an ignoramus at my hair salon screamed in my ear "CAN YOU PLEASE COME TO THE BACK", my aide politely said "Please don't yell; she isn't deaf".

Which brings me to my polling place. I elevated my wheelchair and STILL couldn't reach the top row to vote for president! Judy had to come in and pull the lever for Obama. AND NO -- don't even go there! don't tell me I should have gotten an absentee ballot! I am not in a nursing home, housebound, or out of town. We [disabled people] are supposed to be able to vote in one of the hundreds of accessible voting booths throughout the city, that obviously didn't make it to Rego Park. Even Judy was outraged because where she voted in Roslyn, they had an accessible booth.

Right now I am praying that tomorrow we will have President-Elect Barack Obama!

My Compassionate Neighbors, Again!

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Just when I thought things were looking a little clearer, I opened my mail yesterday to find a letter from my co-op board informing me that if I don't come up with a few hundred dollars, they will start "legal proceedings", which I assume means eviction. Another reminder that I am living among neighbors who are not -- well -- very neighborly. Eviction will take a long time, and I will probably be able to get back on track long before they put me out on the street, but this is something I never thought could happen to me. Then again, I never thought ALS could ever happen to me either. Judging by the news of the millions of people losing their homes out there, I am in good company. Suddenly, $7,000 to renovate my bathroom to enable me to take a shower, or even $1800 for a portable "Fawsitt" shower, seem as far out of my reach as any other dream. Of course, neither of these would be an issue if I lost my apartment anyway. Are there wheelchair-accessible homeless shelters?

I had my quarterly appointment at the ALS clinic. I am still stable. The neuro even said he rated me higher in some strength tests. When we both figured it was probably due to the physical therapy I had, he gave me a prescription for some out-patient PT for range-of-motion work. And a couple of angels gave me funds for in-home massage and stretching therapy with Michelle. Courtesy of another angel, I was able to get a haircut and color last week, just in time to attend the Lou Gehrig Awards ALSA Fundraising dinner. It will honor John McEnroe and Sandy Koufax, so I'm pretty excited at being invited to this $1,000-a-plate dinner!

Today on Oprah's show, they featured the Amazon Kindle, a machine that allows you to store and read books online -- very portable. What a great thing for people with ALS who can't hold books and turn pages. At $349.00, it's absolutely prohibitive for me. But on Oprah's site they are offering a $50-off coupon code for the next 7 days. A wonderful item for anyone who can afford it [the books to download are much cheaper than a paper book, and you can also download music and audiobooks]. When I get the co-op off my tail, I can start saving for a Kindle, which is much cheaper than a portable shower!

Update: Hoyer Confusion, Gracie Mansion, Phys. Therapy Rocks!

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Before I forget to mention it, I won a competition in one of my online writing groups, where points are turned in for gift cards [I won 1,000 points] Here is the link to read my entries for a "Healthy Living Journal".

So my physical therapist, Michelle, came from Gentiva Home Care. Herein lies the great Hoyer Lift paradox. Together with her supervisor, TJ, they got the Hoyer out of my basement storage. Now, I should point out that this thing is h-u-u-g-e! I have been resistant to having it in my apartment because of its size, and the aides have been resistant to it because I can still stand and transfer. But, there have been moments, especially when I was trying out the lithium, that I am just too weak to stand and pivot.

So we got out the Hoyer, and the two ladies struggled with it, and suddenly TJ says "this is just not safe to do with one person. You won't be able to use it." I emailed my friends at the ALS clinic, because they were the ones who told me to book PT to train on the Hoyer. Antoinette went through the roof, phone calls ensued, and the result was a second visit with another PT. No problem this time : he made it look easy with one person. But I thank God I don't have to use it yet. PT is wonderful, and very beneficial. Michelle stretches me out and I have been doing so well with transferring and standing. I intend to pay her privately once a week, when Medicare/Medicaid stops paying her, which will be probably in a couple of weeks. At $85 a pop, I will have to prostitute myself with any way I can make money on the web! I found sites where I can earn Amazon gift certificates, which are really good. And I am still doing everything I can, to avoid spending money! Needless to say, there hasn't been a whole lot of fun or enjoyment, but that's the way it has to be for now. I look forward to my weekly Starbucks outing. My summer culminates tomorrow with the annual Ride for Life party at the Pendergasts. And on Tuesday my friend Stacy is coming down from Dutchess County. She is leaving her two toddlers in the care of a sitter and driving two hours each way. It doesn't get much more dedicated than that! Wait until she hears that I need her to hang the picture she sent to me at Christmastime. How embarrassing! But I just can't do some things myself!
My wishlist : to have the apt painted, have pictures hung, and of course to get into Manhattan and be able to leisurely roll around. And of course the beach -- this is the second summer I will not have seen the ocean. Special wheelchair-friendly mats have made the beaches accessible, and of course boardwalks are great. I am still looking for a group that does outings for disabled people. I am accepting that I will never again see an ocean, feel the sand, roll on a boardwalk, or smell the salt air. For someone like me, who has always lived for the beach, and never lived far from it, this makes me sad.

Through the DNNYC [Disabled Network of NYC], I managed to get an invite to the annual barbecue at Gracie Mansion, commemmorating the ADA [Americans With Disabilities Act] I met Jody there, and we took a picture with Mayor Bloomberg. That, and the party today at the Pendergasts, will be the only barbecues for me this summer, so I am grateful for both of those. It's nice to be in a place where I am not a scary oddity that people avoid looking at. I am going to look for more events like that in the future.

Oy vey-- Glitch for Accessible Taxi Dispatch Program

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The good news is tat NYC is ready to roll out the accessible taxi dispatch program, whereby a person with a disability can dial 311 to have an wheelchair-accessible taxi dispatched. After all, in London, every taxi is wheelchair-accessible. But there's a glitch -- a big one! Watch Arnold Diaz' "Shame on You" report. My reaction? "Oh, for Pete's sake!" Well actually, I had stronger words that went more like "Can't they do anything f---ing right?"