Why the TV Show "Speechless" is Important to Me and Should Be for Everyone -- Disabled or Not

WHAT I'M WATCHING:    "SPEECHLESS"  [ABC TV NETWORK]

People With Disabilities (PWDs) are the last marginalized people to gain respect.  We have made so many inroads in the developed, industrialized world with race, religion and sexual orientation and identification.  Many people and legislators still wish to lock us up in institutions and keep us out of sight .  Although there has been great progress in enabling PWDs to live in the community, we still have a long way to go.  If I didn't navigate the system the way I did, and push for transition to a self-directed care model [Concepts of Independence in my case], I would otherwise be living in an institution or getting care through an agency.  An agency controls everything -- when and where you can go-- and if you can go -- outside the home, and even whom they send to care for you [in some cases, with very little input from PWD or family]

"Speechless" is so important to me because it not only features an actor who really has a disability and shows that "speechless" is not synonymous with "infantile". The show also deals with the concept of "inclusion".  When I became disabled in January, 2004, I was shut out of activities by many able-bodied people, sometimes by inaccessibility of venues or lack of accessible transportation, but often by well-meaning "friends" who thought I would be uncomfortable around "normal" people.  Sometimes I am invited, only to be invisible-- left out of the conversation or even ignored or stuck in a corner by myself.  This show should be watched by everyone, especially by misguided people who have told me "Maybe there's a group or club you can join that's more for people 'like you' " [this was actually said to me more than once].  Get out of your comfort zone -- watch it; it's actually funny.  I give you permission to laugh.

"Speechless" features a family with an adolescent with Cerebral Palsy. There's a mouthy mom-- Maya Dimeo, who is a flawless advocate and played brilliantly by Minnie Driver.  She is the perfect advocate for JJ, even pointing out when well-meaning gestures are insulting.  In the first episode, she asks for a ramp so JJ can get into his school and she goes on a rant when she is led to a ramp which also doubles as a trash conduit.  I can relate to this, since often when I ask for a ramp, I am led to a rear door alongside trash and service entrances.  In my own residential building, I haven't seen my lobby in at least 10 years; I have to enter and exit through the basement.  Especially in older buildings that have been retrofitted, we are segregated.

I love when my caregivers and friends speak up for me in the face of injustice.  Despite my inability to express myself clearly at the moment of impact, I have learned the fine art of patience and diplomacy in protesting after-the-fact.  I write letters and emails, and make relay calls.  I used to shoot off my mouth at the moment of the injustice.  That proved to be ineffective at times and even counter-productive, since tempers are often high at that minute and I tended to say harsh things I sometimes later regretted.  Also, sometimes the person you yell at, isn't the one who can make a change and sometimes is a lower-level worker who isn't very educated in discussing protests in a civil way, especially in the middle of his workday.  And even more likely, as in the recent case of a friend arguing with a paratransit driver, you find yourself in debate with a recent immigrant whose English language skills are not the best and/or can't or won't take direction from a woman.  

But in "Speechless", Minnie Driver is a funny angry person and shows how we can laugh at a life that can also be referred to as a tragedy.

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.

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

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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?"