Wells Fargo seems to have humans with hearts running it!

UPDATE!
Wells Fargo has agreed to cancel her eviction and is in talks with her attorney. There have been numerous calls and letter of support as well as donations to help Sandra. Her attorney is setting up a fund for her. If you care to help, you can call 203-324-7744 or email Sandra Weiler at mrsweiler@aol.com.

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So far, cerebral palsy and cancer hasn't stopped Sandra Weiler. Will Wells Fargo follow suit? Could it be that the banking industry is doing the right thing? Taking what seems to be a "human-centered" approach rather than a "dollar-centered" approach, Wells Fargo has agreed to review a particular case and put their decided eviction of Sandra Weiler, a woman with cerebral palsy, on hold.

At first glance, automatic assumptions would run rampant through many people's minds about how this woman ended up getting an eviction notice. Things like "government assistance" and "moocher" might occur to some people (ok, LOTS of people) reading this.

But before you make up your mind, let me tell you that the woman you see in the still of this video has her PhD, has owned a daycare and is a special education teacher who currently teaches at a university in Connecticut. She was also fighting cancer and has recently lost her medical coverage.

Yes, I know banks are in it for the money but aren’t there times where a person could actually just be going through a rough patch and be given an extension? I’m so glad Sandra Weiler was given an extension and I hope that Wells Fargo will allow her to stay in her accessible home which she has customized to her particular needs to give her the independence every human being deserves!

Top 5 Visitable Cities - Places Where People With Disabilities Have Great Accessibility

Vacations are enjoyed by millions of people all over the world but some people with disabilities can find planning a vacation a bit daunting because of disability issues. Some may even think it’s impossible. I say, with proper planning, you can have a great vacation to remember. Here is a list of the top five most accessible places to visit in the world.

Berlin, Germany

1. Berlin, Germany

It was awarded the “Access City of the Year” in December 2012 by the European Commission due to its aggressive and forward-thinking plan of creating a fully accessible public transportation system. Its plan also includes broadening sidewalks and using tactile guidance systems at road crossings. By the year 2020, the government plans on Berlin being 100% accessible. A large majority of museums in Berlin are already accessible as are most of the more well-known hotel chains but be sure to ask when making reservations what accessible features are currently available. You can search for places to visit at Visit Berlin for People with Disabilities. 

Vancouver, British Columbia

 2. Vancouver, British Columbia, Canada

One of the most diverse cities in the world, Vancouver offers visitors a wide variety of cultural foods and experiences. With its great public transportation system – buses are equipped with wheelchair ramps and the Sky Train and SeaBus are also accessible – visitors have a variety of choices when deciding how to get to where they’re going. Vancouver International Airport is one of the world’s most accessible airports. Some barrier-free features include amplified handsets at service counters, low-mounted information monitors, services for the deaf and accessible washrooms. Travelers can rent vehicles with hand-controls or use the Airporter shuttle bus service to get to their hotels. For more information on where to go and what to do, go to Accessible Vancouver.

San Diego, California, United States

3. San Diego, California

When you think “California” you should also think “beach”! With its mild climate you can enjoy 70 miles of beach when visiting this city year-round. At at least fifteen San Diego beaches, beach wheelchairs are available for people with disabilities at no charge. Some even offer motorized chairs. To find a list of beaches with phone numbers check out CaliforniaCoastal Commission. You can also take accessible sightseeing tours via bus, boat or old-fashioned trolley. Go to SanDiego.org to plan your trip. 

Denmark

4. Denmark

Yes, the whole country. While all Scandinavian countries are very disability-friendly, Denmark stands out because of its “Accessibility For All” program. This is a tourism labeling system for hotels, attractions, restaurants and other places you might want to visit while there. You can search for places and other things accessible using http://www.godadgang.dk/ and narrowing it down by city, type of place, disability and more. You can also find more tourism information at VisitDenmark.com. 

London, England

5. London, England

England might call to mind old tradition but that doesn’t mean it hasn’t modernized its accommodations for people with disabilities. The subway system, called the Tube, has some stops that are not wheelchair accessible so if you’re planning on traveling that way be sure to research ahead of time to find the stops that are accessible. However, the large majority of their buses are accessible and their taxis are required by law to be accessible. You can find accessibility information at Transport For London. Many of London’s most popular sight-seeing stops are free or offer a discount for people with disabilities. There are some places that even allow one care giver in at no charge.

Special Mention:

Morgan’s Wonderland in San Antonio, Texas – A recreational park that provides a beautiful environment free of economic barriers that all individuals, regardless of disability can enjoy. It boasts many attractions such as a sensory village, picnic area, playground and sandpit and a carousel that is accessible to all including wheelchair users. Tickets can be purchased online and are very reasonably priced. Individuals with disabilities and children under 2 get in for free. Visit their site at Morgan’s Wonderland.

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So now that you have some ideas of where to go, let’s go over a few tips on how to travel with a disability:

1.  Plan ahead! Give yourself as much time as possible to research where you are going. Here are some questions you should ask:

·         Is the destination airport accessible? Who can help you find the right accommodations?

·         Does the hotel have a no-step entrance; rooms on the first floor; wide hallways/doorways; grab-bars or roll-in showers? Do they have other accommodations such as interpreters or amplified handsets?

·         Is the local area disability-friendly? How will you be getting to local attractions and sites?

2. Bring a letter from you doctor - Preferably on a letterhead, a doctor’s note explaining your condition and necessary treatments could help you if you become ill or injured. Make sure the doctor’s contact information is on the letter.

3. Be specific - Not everybody will know what your particular disability entails or requires. When makin queries be very clear about what your needs are.

4. Know about emergency services - In the US, 911 is the universal emergency phone number. What about in other countries? Be sure to know what to do if you have an emergency.

Remember, being prepared for the worst allows you to enjoy your time better. Here are some travel sites geared toward helping people with disabilities:

Mobility-Advisor.com 

Society for Accessible Travel and Hospitality 

Enable Mob Travel Resources 

Disability Travel and Recreation Resources 

Happy vacationing!

Even YOU Can Become Disabled - Why Visitability Is Necessary

A Wheelchair Wonderland

I remember vividly a point in time where I wished desperately that the whole world was in a wheelchair so that everyone could know what my daughter had to go through just to go to someone’s home. The city of Austin, Texas is creating that world. Well, kind of.

The city council in Austin, Texas is currently deciding on new rules that could make all newly built homes wheelchair accessible. The first two drafts have already been approved so it’s looking good that this third and final draft will push through without a problem. If approved, levered door handles, light switches placed at lower heights and wide doorways will be features required on the first floors of new single-family homes and duplexes. Not widely talked about –yet – this is known as “visitability”. This is a concept in home design that would allow a person in a wheelchair that lives there or visits access the home without any problem. There are cities in the US that already have these rules in place: San Antonio, Atlanta, St. Petersburg, Fla., and Tucson, Ariz. According to the website www.visitability.org, a home is visitable when it meets the following three basic requirements:

     * At least one zero-step entrance

     * Doors with a minimum of 32-inch clearance

     * At least one bathroom on the main floor that is wheelchair accessible

Becoming Disabled

Some of you may be wondering why this is necessary. If you’re reading this and you’re not disabled then you probably don’t view this as important enough to make legal regulations over. But let’s consider that. Just because you weren’t born with a disability doesn’t mean you never will become disabled. Here are three examples you may have never thought about:

1. Old Age

Think about your (or your friends’) grandparents. Do you know any who use walkers, hearing aids, have trouble standing or reaching or bathing or cooking? Did they always have those problems? Most likely, these disabilities are of the acquired type meaning they were born without a disability but because of aging they now have difficulty with one or more activity of daily living. Oftentimes, the word “disabled” is not used when referring to senior citizens if they’ve lived independently their entire lives. But that’s exactly what they have become (and what the large majority of us will become should we be blessed enough to live into our 60’s and beyond). A home built with visitability in mind will increase the chances that a person can live on in their own home rather than being moved into a nursing facility. And by “a person” I mean YOU!

2. Illness

There are also people who are fine into their 30’s and 40’s and then become ill or develop medical conditions which limit their ability to be as independent as they have always been. Multiple Sclerosis (MS) and Lou Gehrig’s disease (ALS) typically begin to appear in adults around this age and are debilitating diseases which cause severe physical disabilities. Don’t think this will happen to you? MS tends to appear between the ages of 20 and 40 in otherwise normally developing people. 15 new cases of ALS are diagnosed daily in the US; 60% are men and 93% are Caucasian.

Arthritis is another large culprit in this area. According to the CDC, nearly two-thirds of people with arthritis are younger than 65. It’s the most common cause of disability and limits or prevents over 21 million Americans from being able to climb stairs, walk more than short distances or work. It’s more common in women than men but affects all racial and ethnic groups. One study shows that the risk of developing osteoarthritis in your knee that causes pain is 45% and estimates show that 57% of people who have had a knee injury or are obese will develop osteoarthritis. That’s about half of you reading this! 

Of course, there are countless other autoimmune & nervous, central and respiratory diseases and musculo-skeletal disorders that can strike at any time and cause disability in an adult who has otherwise lived a healthy and independent life.

3. Accidents

What about those that are in accidents and become paralyzed or receive a traumatic brain injury (TBI)? Have you seen the show Push Girls? Every one of those women was in an accident that paralyzed them. Any of these situations can happen to each and every one of you. Sounds bleak, I know but imagine what your life would be like if you couldn’t enjoy the little things you do now, like going to your sister’s house for dinner or to your friend’s for girls night as you always have because your wheelchair can’t go up the one step leading into their home or your wheelchair can’t get through the doorway into the living room? Now imagine if every new home built allowed you to come and go as you please, without even a thought?

Disabled America

According to the US census, 1 in 5 citizens has at least one disability and the number is set to grow as baby boomers age. Just over 1 in 4 American citizens in their 20’s will become disabled before they retire. But the “that can’t happen to me” mentality keeps most of us from worrying about our futures. 64% of wage earners believe they have a 2% or less chance of being disabled for 3 months or more during their working career. The actual odds for a worker entering the workforce today are about 25%! 

Maybe it’s time you start thinking about what could happen to you or your spouse now and planning ahead. Don’t you think having a home already set up to visitability standards would make your life easier in the long run? I hope to see this concept become the standard in my lifetime for all our sakes.

Would you like to know what the probability of you becoming disabled is? Check out the Personal Disability Quotient calculator here. 

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CHECK OUT THIS POST ON 1800WHEELCHAIR.COM !

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Sources:

http://www.disabilitycanhappen.org/chances_disability/disability_stats.asp

http://www.disabilityscoop.com/2014/01/21/accessibility-requirements/19035/

http://www.alsa.org/about-als/who-gets-als.html

http://www.cdc.gov/chronicdisease/resources/publications/aag/arthritis.htm

Don't Hate The Cure, Hate the Haters!

I am so sick of people who look for "cures" or better treatments or a change in their medical treatment being looked at as vile creatures that should be relegated to the depths of all of Dante's realms for eternity.

People with disabilities are already stigmatized and often cut off from general society because of antiquated assumptions and prejudiced thought. Why must people with disabilities have to endure hateful accusations from people within their own communities???

For those of you who may be unfamiliar with my family here’s a tiny recap. My daughter is now 15 years old. She has cerebral palsy which affects all four limbs that was caused by an injury at birth aka doctor’s error. She is non-verbal, non-ambulatory and needs full assistance in every aspect of life. She is a beautiful, intelligent, loving, funny girl who is disabled. I had her when I was barely 20 years old and raised her on my own. It was hard. I mean, really tough. Forget the psychological price a parent pays, the physical bill is enough to make some people dine and ditch! I can’t imagine myself without my angel face but I would be lying if I said there weren’t days where I felt like I just couldn’t do it anymore.

I would also be lying if I said I don’t still wish there was a cure or miracle waiting out there for us. If I came across some medical procedure, medication, doctor, wand, fairy dust or crystal ball that would take the CP right out of her without the risk of death or something like that, I wouldn’t even take a second breath before I screamed out, “HELL YES!!” Why do other parents – especially those of children with autism I have come to discover – judge me, and others like me, for that? Why do people in the disability community insist on further alienating individuals in their community who WANT a change? One paraplegic may be fine with never walking again while another searches for the scientific breakthrough that can give her her mobility back again. Is the former a “better person” than the latter because she’s “come to terms” with her disability, “accepted what’s been dealt”? Is the latter “better” because she’s a “fighter” and “isn’t giving up”? Why does one have to be better than the other? Each one of you reading this makes decisions for your own life that you feel is in your best interest. Each one of you reading this makes decisions for your own life that you feel is in your best interest. I’m 100% sure that none of you like it when someone offers their thoughts on which direction you should go in, especially when you don’t even ask!

Those parents who say things like, “I would never cure my child because then they wouldn’t be who they are”. Really? Every circumstance in everyone’s life makes us who we are. The family I was born into, the way my parents spoke to me, the school I went to as a kid, the friends I made in high school, the jobs I held in my 20’s…all those things make me into who I am. And I’m still evolving. Who I am in 5 years will be different than who I am at this very instant. So yes, if a child is cured or healed of their illness/disease/disability, they WILL be a different child. Anything that happens TO him, FOR him, WITH him, BY him will change him, for better or worse, whether he has a disability or not. 

How can anyone automatically assume that they know beyond a shadow of a doubt what their kids’ desires are when that kid can’t vocalize them? And who are you to judge me and others like me for wanting our kids to be able to have a different life? Do these people not think that if my daughter was given the choice, she would choose to WALK? Do they not think that she would love to TALK, to HAVE FRIENDS, SLEEPOVERS and GIGGLE FESTS? Do they not think that she would choose to have an easier road so that putting on a shirt is not a struggle; so that eating is a matter of preference rather than a chore of organizing her lips, tongue and cheeks in a manner that would allow her to bite, chew and swallow without spilling, coughing or choking??

Yes, if she were a “normal” kid in a “normal” school, she would be different. Maybe she would have an attitude – teenagers often do. Maybe she would be a bookworm. Maybe she would be a tomboy or a princess. Who the hells knows? I wish I did. Don’t villainize me for wanting the best for my child. Isn’t that what a parent is supposed to want?

Facing Your Fears - Do Disabilities Scare You Away From Enjoying Family Outings?

When we were kids, my Uncle Victor and Aunt Lina used to take me and my cousins to K.I.S.S. park every summer. At that time, there were about 6 – 8 of us, cousins and siblings, all elementary-school age. K.I.S.S. is an anagram that my uncle made up but back then, I really thought the park’s name was Kiss – only years later did I find out that it wasn’t! The adventure would begin with a mysterious letter we would get in the mail (what kid doesn’t love pulling a letter out of the mailbox with their name on it?) It would be in the form of a puzzle or note of some kind with clues. We would put the puzzle pieces together or figure out the riddles and discover that we were about to embark on another great day at the park. I honestly can’t remember if there were any other adults there besides the hosting couple or how we all even got there! I just have these wonderful memories of hot summer days, dusty games of soccer & freeze tag, canoe rides, horseback rides and fun, fun, fun! The entire time I wrote this section, I did so with a big smile on my face!

Many years later, when I was in my early 20’s, there was a thought to revive this old tradition. Several of us were excited when Uncle Victor suggested we hit the ol’ park again. My daughter was a toddler and I was having a (very) difficult time with adjusting and accepting life as we knew it but I was filled with nostalgia and excitedly looked forward to K.I.S.S. with my family. By this time, I was in a very deep depression over my daughter’s state of health. She couldn’t sit on her own, let alone walk; she was non-verbal so there were no first words or “mommy”; she was having seizures that were progressively getting worse. When I was pregnant, as all moms-to-be do, I had these visions and fantasies of how life was going to be. Her first steps, first words, going to the playground together, shopping for school supplies, sleepovers, giggle-fests…Everything crashed and burned the day she was born. I found myself constantly running through flames, trying not catch fire as I stumbled through the burning building that became our lives. Every milestone missed, every specialist appointment, every “normal” kid who walked by us was another spark, a new fire threatening to engulf me. I can tell you that practically nobody in my life had even an inkling that I was feeling this way. I’ve always had a hard edge to me and I’m sure I came off as angry or bitchy. But I felt tremendously lonely and terrified and sad. These are still feelings that stick with me today, thankfully not to the same degree, and I know that the majority of parents who have children with disabilities know what I’m talking about. I was having a tough span of days filled with these icky feelings when I wrote “A Mom Missing Out On Her Milestones”.

It was difficult for me to enjoy the day at K.I.S.S. park even though I had hoped that it would be a great day. There they all were, those walkers & talkers, flitting about, eating burgers at the picnic table we couldn’t get a wheelchair under no matter how we angled it, playing kickball, just doing what normal people do at a park. Enjoying the sun kissed summer afternoon, their laughter floating in the peaceful breeze as puffy clouds gently slid across a sapphire sky. That’s how my eyes saw their joy. Soft. Velvety. Melodic.

All I could think about was the uneven ground that I had to fight with the wheels of her chair. There were tree roots and branches littered about, hilly sections, small ditches and other barriers that come naturally in a park. We were supposed to walk over to the canoe area – a walk that we always enjoyed in the past – but I kept thinking about the struggle I would have pushing the chair over the grassy areas to keep up with the rest of the group. Not to mention the uncomfortable bumpy ride for my daughter who was sitting in the chair! And what about the canoe ride itself? How were we going to safely transfer her into the canoe when she can’t help at all? She can’t sit without full assistance – how can we get her to actually stay in there? And if we do manage all that and make it back, how will we get her out of it now that we’re IN the water and the canoe is bobbing about?

These of course were only (some of) the PHYSICAL worries that consumed me. I haven’t mentioned the bigger meaning behind the physicality involved in bringing along a person like my daughter to a fun day at a park! Seeing everyone else dashing about care-free made our reality (mine & my daughter’s), our differences, actually palpable. These differences weren’t just a notion. No, they were real; unquestionable; cold and hard. The toll this takes on a person’s psyche is sometimes unbearable. There are some days where I have to work at keeping my joy.

She is now 15 and looking back I wish I had done so many things differently. Isn’t that how it always is; 20-20 vision tends to be perfect. Why did I allow myself to focus on the negative parts of the trip? Thinking back on it, the only memories I have from that day is a sad game of kickball (for me; everyone else was having a great time, as I should’ve been) and the canoe ride. (Which, by the way, wasn’t at all terrible. She was still little so transferring is not the game of logistics it is today. But even today, I have Nick Vujicic to remind me that pretty much anybody can get in and out of water!) Because of my own personal issues, I didn’t allow myself to enjoy what she could do. She was having a beautiful time with her cousins even though she couldn’t run around bases or get a turn throwing the boomerang and wasn’t that the point of the day?

I find myself still paralyzed with fear to this day. I want to do things or go places and decide that I will take her no matter what but then I chicken out at the last minute. I start thinking about the things that can go wrong – maybe there won’t be an accessible area for us to sit/stand; maybe there will be steps we can’t get up; maybe it will be too crowded and she won’t be able to see anything except strangers’ butts; maybe we won’t be able to find parking. The list goes on and on. And yes, those things can happen. On our first family vacation in 2012 we found ourselves blocked out of a building that housed the resort’s pizzeria, arcade and ice cream parlor because it had steps, even to the first floor!

But what if things like that don’t happen?? What if we go and there is a spot waiting for us to park in, the venue has curb cut-outs and ramps leading to it so we can get there and there’s a wheelchair-accessible area so she doesn’t have to miss out on seeing what everyone else is seeing? What about that?

There are some things that we just can’t do, for logistical and emotional (on my part) reasons. We can’t go to certain people’s homes because they're just not accessible. Taking the train into the city for a day of sight-seeing and shopping – not gonna happen. Spending a Sunday at the beach from dusk till dawn with coolers filled with bagels, cold cuts and bottled water – a thing of my past. But why should that stop us from creating wonderful, loving, fun-filled memories doing things that we can do? It shouldn’t –  and it won’t!

Did you have fears or sadness surrounding family outings like me? Do you still? What do you do to try to get past these feelings?

Reverse Inclusion

DAMMIT I'M PISSED NOW

I read this story about a special ed teacher (who is qualified by certifications & degrees, no doubt) who put together a club at her school, "Creating Exceptional Character" which is a "local chapter of the Council for Exceptional Children, a national organization devoted to special education. The club brought typical students into classrooms after school to work with students with special needs." You can read about it here.  She then created an elective course offered to the general education juniors & seniors that "would follow a goal related to the club, which is to introduce the history and interaction of individuals with disabilities."

The article called it a "reverse inclusion" class. I have severely mixed feelings about it. In fact, the more I think about it, the more it pisses me off! I would like to start off by saying that I am very, very sure this teacher had good intentions in creating this club & elective course. And maybe I'm being overly sensitive but a couple things really get me going.

First of all, the typical kids who take this elective course are referred to as "positive-peer role models". Excuse me, but why are the kids without disabilities the "positive role models"? Don't you think that those kids stand to learn a lot from the kids with disabilities? Why aren’t the kids in wheelchairs considered role models? I would say that my daughter models ultimate levels of patience, kindness and immeasurable love, for starters.

The teacher stated in the article, “I saw really good students not knowing how to interact with special-needs students, and it gave me an idea to design a course that would educate typical students." That's great. I really like the sound of that. Then she goes on to say, “You can’t imagine what it’s like to watch a football player who’s popular and has a girlfriend, to feed a Thanksgiving dinner to a student in a wheelchair.” WHAT?? So a POPULAR kid with a GIRLFRIEND feeding a kid in a wheelchair at dinner....THAT'S the standard of successful inclusion??? WTF!!!

Why do people automatically assume that people with disabilities should be pitied and have people around them saying things like, "awww...look he's so cuuuute!" when he's trying to tell a joke or flag a taxi or just wanting to socialize...you know, things that everybody else on the planet does!

We need to look at people with disabilities with the SAME EYES we look at people without disabilities. If you wouldn't say, "awww" to a man in his 30 who is not disabled, why would you do that to someone who is? That's called INFANTILIZATION. Yes, it's actually a real word and a real occurrence. And it's also really annoying.

When I went to the Down Syndrome conference a few weeks ago, one of the self-advocates there was a young man who is 21 years old and he gave a power-point presentation entitled, "Why We Are More Alike Than Different", comparing people with Down Syndrome to those without. I was sitting at a table with a bunch of college girls and all they kept saying, Every. Single. Time. this man said anything was, "awwwww! he's so cuute!!" and they all looked at each other, with their shoulders raised, eyebrows up, corners of their mouths turned down...you know, that dumb "aw shucks" look girls get sometimes. I wanted to slap them every time. But I didn't want to get fired that day so I held off on that. I mean, he was making sense, putting forth a very reasonable and logical argument: he IS more alike than different! But I have this nagging feeling that they didn't hear what he was saying. They were just thinking how "cute this boy is, standing up there, in his cute shirt and tie...oh and look! He managed to tie BOTH his shoes!" AWWWWWW!!!

So back to the “reverse inclusion” idea…I know some of you out there will wonder, “What’s the big deal?” Well, here it is: why is it, that when a program, social activity, fun gathering, whatever, is organized for people with disabilities, it seems like it’s a great big pity party? I mean, doesn’t my daughter DESERVE to have fun stuff to do – not because she’s disabled but because she’s a great kid! Take the Girl Scouts, for example. Is it an organization that gets girls together to “give those poor girls something to do”. No! They teach them things; the girls get to make friends, have fun; they impact others around them because of their different strengths & abilities. There’s a purpose behind it. Something bigger than getting the crippled kids in a big room and getting the cool kids to smile at them and feed them mashed potatoes.

Anyways....this program, the "reverse inclusion" one, at the end of the day, although it started out with a good intent, is a piss-poor example of how inclusion SHOULD be done.

Damn, we got so much work to do!!! 

Accessible Playground For People With Disabilities

I forgot all about this park until I just came across an article about it. Thanks, Arc Circle of Family and Friends!

It’s called Morgan’sWonderland, located in Texas, and it’s designed for kids and people with disabilities to enjoy. It’s a place where special needs kids and able-bodied siblings can have fun together. Families can have meaningful quality time that everybody can enjoy.  It has some great features and it’s very inexpensive. Anybody in the disabled community knows that when you add the word “special”, or any variant of it, to something it automatically boosts the cost of the product or service by at least 20%. Not here. One-day passes for adults: $15; kids: $10: special needs: $0. Can't get much better than that!

I read an article about it in Family Circle. This choked me up when I read it:

"Before the park, I had to sit back and watch everyone else play," says 18-year-old Miguel Castro of San Antonio, who has spina bifida and is in a wheelchair. He celebrated his 17th birthday party at the park. "If I had to pick a favorite ride, it would be the swings. I hadn't been on one since I was 2 or 3 years old, and didn't really remember what it felt like," says Miguel. "Now I can go on them whenever we visit, and have fun like everyone else. It means everything to me."

Can you imagine not being able to remember what it felt like to be on a swing because your body wouldn't allow you to get into one after the age of 2 or 3? How many times did you play at the park or on the school grounds for recess with your friends? Did you slide down a huge slide or sit in the tire swing with a couple of buddies and spin, spin, spin till you got so dizzy you almost threw up? Did you play tag and chase each other on the monkey bars? In elementary school, we called the playground equipment “the big toy”. I have lots of awesome memories from playing on that thing.

My daughter has never and WILL never be able to play on a big toy. She can’t get on those swings or go up and down that slide even though she really, really wants to. I don’t even go anywhere where she would be watching other kids screaming in delight on one because of the torture on her face. If you think I’m exaggerating, take your own kid, niece, nephew, neighbor’s kid, whoever, to a park, sit them right in front of it and tell them they can watch from their seat but they can’t get up and they can’t go play.

That all sounds depressing, doesn’t it? I just keep in mind that it’s only one thing she can’t do. But I often wonder what the heck I’m gonna do when my son gets old enough to want to go to the park. I can’t NOT let him go; I can’t take the girl. The only thing I can figure is I will have to have separate play dates with my own kids!

I wonder what other parents of kids with and without disabilities do in these situations??

Handicapped Parking

Ok people. Let’s talk about handicapped parking. If you do not have a placard that allows you to park in a handicapped spot, DON’T PARK THERE. If you see diagonal stripes on the ground in between or beside a handicapped spot, DON’T PARK THERE.

This is a huge pet peeve of mine. Listen, if your lazy ass doesn’t feel like walking the 2 extra spots it would take to get from your car to the 7-11 door, then stay home. If you’re at Wal-Mart or the mall or at the Piggly Wiggly and the parking lot is packed and you don’t feel like walking that far, then stay home.

“I’m really late”

How is your being late my problem? Perhaps if you didn’t snooze the alarm sixteen times/spent less time applying the caked on make-up/hadn’t stayed out too late last night and woken up with a hangover the size of Cleveland, you might be running on time. But again I ask: how is your being late my problem? Now, because Your Royal Highness has decided it so, the spots designated for people who cannot walk as far, as fast or at all due to their disability are a free-for-all and I have to drive around the lot trying to find a spot that will allow me to get my daughter out safely.

“This will only take a minute”

It never takes just a minute…and even if it really did take only a minute, why should I have to wait on you? Ah yes, Your Royal Highness feels we should wait until Your Majesty has procured a mocha-capa-frappa-latte with just the right amount of sweetener and a carton of Pall-Malls before we, the commoner, the lowly simple folk can have the same opportunity. Wait; allow me to roll out the red carpet upon your exit, Your Majesty, lest your Louis Vuitton’s be soiled!

All joking aside, it is so infuriating when I see people park in the reserved areas and don’t even think twice about it. I know there are folks with invisible disabilities that use handicapped parking and they get the evil eye because they don’t look disabled. But then you have those who use their granny’s or aunt’s or brother’s placard. If you are somebody who uses a placard when you know you’re really not supposed to, I hope you get fined. And I hope I’m the reason you got fined. Because I looove calling people out on their douchery. That word is so gross and anybody who knows me knows I hate that nasty word but that’s how I feel about people who refuse to walk the extra 10 feet.

Stop being a jerk!

A Mom Missing Out On Her Milestones - Children With Disabilities

“Well, this is all she’s ever known so it’s not like she’s sad about what she doesn’t have anymore”

“She was born like this so she doesn’t know any other way to be”

“Look at Sara. She was born like that and she’s always so happy” (Sara is my aunt who is now in her 60’s and deaf)

These were all things I would be told when I would get sad about my daughter being disabled. She can’t sit, walk, talk, feed herself or transfer herself from one spot to another. She will never go to sleepovers, drive, graduate from high school, or get married. Please don’t say ‘you never know’ because yes, it’s true, miracles do happen and I am a woman of faith but as things are right now, this is reality. I can say these things without breaking down at this moment but it hasn’t always been this way. (There are still days when I can’t think about these things without losing my mind but thankfully those days don’t happen as often.)

I am confident that the people telling me these things are only trying to help. I guess what I was supposed to see was that she hasn’t lost anything…she never had it to begin with. Okay, I can see the logic behind that thinking but it just doesn’t translate into real life. Not with me, anyway. I know for a fact that many people who were born with their disability are perfectly aware of what they don’t have. And believe you me, I was fully aware of what I didn’t get to have.

What I was supposed to have was a baby who would come home with me when I left the hospital. She was going to smile and sit and clap her hands. She was going to pull herself up to stand and walk across the kitchen floor. She was going to sit in a dining room chair and eat her cereal all by herself. She was going to reach up for mommy’s hand and bounce along beside her, crossing the parking lot of Target, pigtails bouncing, sneakers flashing.  She was going to kindergarten. She was going to make mommy breakfast in bed – crispy toast broken into pieces because the butter was tough to spread, a glass of OJ dripping onto the tray and a flower made from construction paper grandma helped her make. She was going to sit next to mommy’s head while mommy lay in bed on a sleepy Sunday morning and brush it and put all these crazy ponytails all over it because that’s what mommy did with grandma when she was a little girl. 

I was going to have a little girl who would call me mommy.

So maybe she doesn’t know what she doesn’t have. But I DO. So if I cry or am sad about the fact that I missed out on my milestones please understand that I am allowed to mourn for the child I thought I was going to have. The one I did get is smart, funny, confident, strong-willed, gorgeous, loving, strong, protective, a daredevil and an awesome kid to have around! And the truth is I would not be who I am right now if I wasn’t blessed with her. But that does not mean that I can’t mourn for the little girl I was expecting. 

Let's Go Swimming!...Maybe - Accessible Pools in Public Places

Public Pools and the ADA

The Americans with Disabilities Act (ADA) outlines the rights of people with disabilities and forbids discrimination of any kind towards this group. In 2010, the Department of Justice (DOJ) sought to apply this regulation to public entities that offer a pool or spa, such as hotels, by requiring them to make these amenities accessible. 2 ½ years later we are still waiting.


Apparently 2 years is not enough time to sort out what exactly the government means when it says “pool lift” or “sloped entry”. So no swimming for you if you’re unable to get yourself in and out of a pool and there's no one around to help you, buster!

Thanks to hotel lobbyists, such as the American Hotel & Lodging Association (AH&LA), who pushed hard to extend the deadline for compliance set forth by the DOJ and Senator Jim DeMint (R) who introduced a bill to do just that right before the previous deadline of March 17, 2012, the NEW, new deadline is January 31, 2012. To some people, I guess as long as THEY are not affected, accessibility doesn’t matter too much. Official deadlines for when these public entities were supposed to be in compliance have been extended repeatedly since 2010 – at least a half dozen times – even though these businesses were well aware that they were obligated to make these changes.

"Reasons" Against Making Pools Accessible

Some hoteliers who oppose the DOJ requirements threatened to close down their pool entirely or to fill in their spas. BOOO-HOOOO! WAH-WAH-WAH! You sound like a bunch of crybabies – “If you make me do that then I just won’t have a pool for ANYBODY!” The image of a two year old stomping his feet with his arms crossed and his bottom lip pouting springs to mind. Fine by me; lose ALL your business if that makes you happy… Another argument made by the competent and crafty hoteliers is that installing a permanent lift will increase their liability during times when there is no lifeguard on duty. UHHHHH, hold on a minute. Are you saying that able-bodied folk NEVER go in swimming pools outside of posted hours? DAMN those insolent handicapped rejects! Why can’t they obey the rules like their astute counterparts? You know, the normal people!

Family Ties

Imagine going on a family vacation with your children and leaving one of your kids at home or pool side or in the hotel room because they were too big for you to lift in and out of the pool. Imagine if your husband or wife was a quadriplegic and had limited use of their arms and couldn't help you help them get into the pool. Imagine if it was YOU; watching from the sidelines or just not even going at all!  This does not sound fair. It sounds miserable, depressing, demoralizing. To be treated as less-than, unimportant. Am I taking this too far? Really? My daughter’s ability to be able to socialize and vacation with her parents and brother is directly related to whether or not we can get her wheelchair where we are going. Read about when we were on a family vacation and couldn't get pizza and ice cream. Saying to her, “You can’t go to there because your wheelchair doesn’t fit there” is the same as saying “You’re not important enough to make a change that can open up your world”. Literally.

Any one of us (yes, even YOU, dear reader) could BECOME disabled by an accident or fall, sickness or aging; just because you weren't BORN disabled doesn't mean you never WILL be!!

Family Fun – How Barriers to Access Can Ruin A Vacation

So we went on our first family vacation. I was very excited; maybe almost more so than my daughter, if that’s humanly possible. And now that I’m back, I see it wasn’t all perfect but I’m definitely glad we did it.

A Family Resort

We went to Smuggler’s Notch which is a family resort in Vermont. I chose to go there because they have an adaptive program that the girl would be able to enjoy. While at camp, she went kayaking, swimming and swung on a Giant Swing, to name a couple things. Oh, she was also serenaded by a friendly pirate! The grounds were beautiful. Whoever did the landscaping should be commended. I saw the most unique and interesting flowers and bushes that threw off such a beautiful aroma as you walked down the different paths in the Village Center, which is the main resort area. The condo we stayed in was mostly wheelchair accessible. It was a very nice-sized apartment with comfortable beds. It was supposed to have a wheel-in shower but instead we got a sauna tub. Lifting her in and out of the tub would have been totally impossible if not for my strong hubby. One of their on-site restaurants, Morse Mountain Grille, is absolutely AMAZING. Everything we tried tasted gourmet. Even their white pizza was better than anything I’ve ever had in NY. Needless to say, we had most of our meals there!

Disability World

So what’s this post about? In the midst of all the fun and beauty, it struck me (again) how able-bodied folks can be so clueless to the fact that the tiniest little thing, like a 1-inch gap, lip, crack, whatever, in a sidewalk or doorway can completely block a person who is non-ambulatory (like my daughter and by extension, us) from entering a building, crossing a sidewalk or enjoying family time. I can’t really blame folks who don’t live in the Disability World for not knowing. It’s just not a path you’ve walked (or rolled in, so to speak) so I can’t expect you would know it without being educated on it. That’s what I’m here for.

Barriers to access are anything that block a person from accessing a public space. This can be something as simple as a single step into a building or narrow pathways in a department store to larger barriers such as no elevator in a multi-level building or the lack of a pool lift for wheelchair-users at public pools. 

Use Your Imagination

To all you walkers: imagine if you were on your way to a beautiful exotic island where there were gorgeous sunsets and the most awesome poker tables (for those of you readers who don’t really care for sunsets). You would be with your favorite people and you all had planned what you would do every day and every night together. You have all been looking forward to this getaway for so long and finally the day has arrived. You watch out your window as the plane roars down the runway; you’re all so giddy with excitement you can’t stop talking about what the first thing you’re each gonna do is. Finally, the plane touches down; you all grab your carry-on’s and walk towards the front of the plane where the pilot waves you off to your destination. You turn to disembark and notice that the jet bridge is about 3 feet away from the plane’s exit doors. You see, the jet bridge is old and doesn’t quite reach the plane but it’s allowable because it was made before the laws changed that made it mandatory that all jet bridges reach the planes’ exits. Sounds a little wonky but that’s ok because as long as you can step across, you’re fine…Wait a minute! You can’t reach it! Your legs are too short! Your loved ones are all taller than you are and are able to walk across. You can’t cross the jet bridge; which means you can’t get to the island; which means you can’t see the sunset or play poker. Your loved ones are all going to be able to do this without you. They feel bad you’re getting left behind but surely they can’t NOT go just because YOU can’t. You’re gonna miss out on everything all because of the damn jet bridge being JUUUUUST a little too far for you.

A Huge Barrier

The Village Lodge at Smuggler’s housed the on-site Ben & Jerry’s ice cream parlor, pizzeria, deli and pub for the resort’s guests. If you didn’t want to leave the resort and wanted a slice of pizza or to take the family to get ice cream after a long, hot day filled with fun activities, this was where you wanted to go. Except my daughter couldn’t go there. There is a walkway leading up to the door but there is a 1-inch lip at the end of that walkway that her power chair cannot get over because of its mechanism on its underside. Even if the walkway was made to end flush, once you got in the doors there are stairs galore. Normally, any public accommodation must be made accessible to all except if those changes are not “readily achievable” or when “they are not easily accomplished without much difficulty or expense”, according to the Americans with Disabilities Act (ADA). To read more about the ADA click here.

Not knowing about the barriers to access, we planned to go to get some ice cream with the kids. When we realized we couldn’t get in with the wheelchair it was upsetting, to say the least. The girl didn’t even want the ice cream; she’s just the type of kid that loves to do family things and she wanted to go in to the ice cream parlor with her mom, dad & brother. Instead, dad went in to check what he wanted while mom waited outside with the kids. When he came out, mom went in with his order in mind while he took his turn waiting outside. I felt excluded, hurt, left out, ignored. I felt like an outcast, an outsider. Like I didn’t belong. And I wasn’t even the one in the chair. The biggest part about this is that she knows that the reason we couldn’t go in was because of her wheelchair. I will be honest. I was way more upset than she was. But I wonder how many other families that have gone there for their adaptive program have also felt the way I did.



Maybe sometime soon every jet bridge will reach the plane’s exit doors everywhere, mandated or not.

A Little 411 On The Girl - Living With Cerebral Palsy

My daughter suffered oxygen deprivation during birth which caused a permanent injury. She now lives with quad athetoid cerebral palsy (CP). Athetoid CP means her tone (the tenseness/softness of her muscles) is mixed. Her trunk has low tone mostly and that's partially why she is unable to sit up unassisted. But sometimes it has high tone, like when she arches back. She usually arches when someone is trying to get her from one spot, like her wheelchair, to another, like her bed. She thinks it's hilarious to see someone struggling. No, really, she really cracks up at this. And the more you say things like, "Oh my God; wait!; stop moving; Oh, no, you're going to fall!", and the more you struggle to get her to cooperate with you, the more she cracks up. If it wasn't so dangerous (you know because falling on the floor & cracking your face open is usually not a good thing!) it would be kinda funny because she's got this crazy laugh. It goes from being loud and honking like a goose to absolutely silent with her mouth wide open and all you see is her shoulders bobbing up and down (I refer to it as the "shoulder shake").

Wings are in "landing mode"

The mixed tone is also in her arms and legs. Sometimes they are very stiff and it's hard to get her to relax her elbows and shoulders. Her arms jut straight out from the sides of her body and when she's in her wheelchair this can be dangerous because she can get them stuck behind walls when we're coming around corners or in doorways. They look like wings on an airplane or bird and I tell her to "bring the wings in, no time for takeoff now"! She has punched a few people from time to time, including me. That's kinda funny when it happens to someone who is annoying, not so much when it’s me. When we're in a crowded place, like in a mall, she could be sitting nice and quiet then all of a sudden she'll get excited about something and her arms will fly out to her take-off position and if there's anyone near her, their butt's gonna get smacked! Ahh, I recall the stunned faces of many a stranger that have turned to see that it was only a 14 year old girl on wheels who has just violated their nether region! That can be pretty hilarious too. I just start to get a little nervous when the person near her is a man and he's facing her because his family jewels are in the line of sight and that can be pretty awkward!

Games Day - Fun With Adapted Sports

Today was Games day at Mitchell Field in Nassau County and boy what a gorgeous day it was! There was no humidity, the sun was shining and a light breeze kept us happy while we waited our turn at each event. My daughter's favorite event (which is actually not an event but a fun activity to do in between events) is the swing. There is a huge swing that you can roll a wheelchair right onto and people who can't sit on a typical swing can still enjoy the twisting and turning of a crazy ride. Therapeutically speaking, it's referred to as vestibular motion. "Entertaining-ly" speaking, it's just plain FUN!

I have to say that I truly enjoy going with her. Not only because she gets to do fun things like ring toss, precision throw and the 40m dash (her favorite by far) but I get to feel comfortable. I'm not so worried about taking too long to do something, like giving her lunch, or being concerned about her wheelchair getting stuck or in the way of someone. Everyone else there is just like me. I fit in. I'm surrounded by people who know exactly how I feel about certain things without having to say it. Yeah, today is supposed to be about her but as it turns out, it's about me too.

Today was a great day!

One Reason Why Families With Disabilities Become Hermits

Sometimes I feel like a hermit.

Do you know how many family gatherings, birthday parties and dinner invitations I have missed because I just could not get The Girl into the home where the event was taking place? In some cases, even if I could get her IN, once there it would be such a tight space that having her in her wheelchair would be impossible. Or I'd have to park us in one corner and she wouldn't be able to move from that spot the entire time we were at that "party". Sounds fun. In other cases, the event was held outdoors but we still could not go because the terrain would not allow for the pushing of a wheelchair (like sand on a beach or rocks and pebbles in a grassy park). So I opt to stay home. Well, “opt” is not really the correct word here because I really didn’t have a choice, did I?

Just going to my dad’s house is a sweaty endeavor. The house is not crowded with people and even though it’s a smallish 3-bedroom home, there is space enough to maneuver a wheelchair within the dining/living room area which is where the front door opens directly into. So what’s the problem? Why so sweaty? Well, there are 4 short steps leading up to said front door. This means that The Girl’s power chair can’t be used because it is impossible to lift so we have to bring her manual chair (which is not as comfortable for her to be sitting in for extended periods of time). This chair is by no means light but at least it is collapsible so I can fit it in my trunk and all the pieces come apart so it lays flat. But she can’t just be wheeled into the house (4 steps, remember?)

First, the chair has to be lifted out of the trunk and assembled (opening the frame, attaching the seat cushion, backrest and footplates which could take up to about 5 minutes or so).

Then The Girl has to be lifted out of the seat of the car (try lifting over 90 pounds of wiggly dead weight out of the tight area inside an open car door, swiveling around 180 degrees and placing it on a seat that is 2 steps away without dropping it or injuring it).

Then she must be belted into the seat and leg plates and rolled across the yard that is full of roots, branches and an occasional small unseen hole (my dad takes care of his yard but it is still outdoors) to the steps of the front door. Nature is beautiful but is not conducive to rolling a wheelchair over it so you need some serious arm and leg strength!

Then she has to be bounced up the four steps, backwards, lurching up a step at a time and squeezed through the storm door and the front door, with 2 people helping with this endeavor, hoping all the while that the chair does not roll back down the steps or tip sideways and cause injury to my precious. There is option number 2, where she is physically carried across the yard, up the steps and into the house and the chair is wheeled in separately. But, again, we are talking about a wriggly, 90+ pound, dead-weight beauty. All in all, just this part of GETTING INTO a non-accessible location takes about 15 minutes of physical labor if things run smoothly. (There have been countless times where the backrest would not slide into its 4 receivers on the frame or the lap belt was stuck between the frame and the seat cushion after she was already sitting on the chair so the whole process needed to be restarted from the beginning…) When we leave it’s all the same process again, just in reverse order.

Phew! I’m exhausted just thinking about all this. And that is why there have been many times where I have just declined an invitation. Just thinking about it gets my anxiety levels up. I haven’t even touched upon what happens when we FINALLY get inside the home…Then there are those times we get somewhere only to find that no matter what we do it's impossible to actually get inside.


Easier to stay home sometimes. If you had to do a 15-minute full-body circuit workout every time you wanted to go somewhere, right before you got into the "somewhere" you wanted to be, would it be worth it?

Stressful Small Talk

Typically, I'm a very private person (so what the heck am I doing here??). I don't talk about my personal stuff with anyone. I was just watching the show "Undercover Boss" and I am amazed at how much people will share about themselves with strangers. OK, they were being filmed so maybe they were going the extra mile for the glittery lights of Hollywood but I hear people all the time on line at the supermarket or in the lobby of The Girl's school, just sharing away...about their husbands/kids/sister-in-law's neighbor's dog's previous owner's fiance...blah, blah, blah.. Me? Here's a typical "small talk" conversation I will have with an acquaintance: ************************************** Them: Hi! How are you? How are the kids? Me:    Oh, we're great. All doing good. You? Them: Not too bad...I had such a migraine last night and my husband is so tired of me complaining about it, but I keep telling him, if he would just.... *************************************** You get the picture.  It is just so awkward to decide how much to talk about without sounding like I’m either a Debbie-downer or just a frigid b**.  Watch: *************************************** Them: Oh, you have a 15 y.o. too? That must be great, having a built-in babysitter at home! Me:    Well, not really. My daughter is actually disabled so she really can’t do that. (way to bring the mood down, rockstar) Them: (with a look of pity on their face) Ohh, I’m sorry to hear that.  *************************************** Then the awkward silence begins and I have to try to recover the conversation so they don’t feel bad about what I just shared with Them. Or it could go this way: *************************************** Them: Oh, you have a 14 y.o. too? That must be great, having a built-in babysitter at home! Me:     I smile and nod my head and look away (frigid b**) to try to think of how to change the topic before They ask too many questions and I have to either actually tell them how it really is or spin an elaborate lie about how she handles her little brother so carefully and Even Knows How To Feed Him By Spoon!...all with a great big kool-aid grin on my face while crumbling inside over the never-to-be fantasy. I have lots of those. Here's one. *************************************** I know people will say, "You don't have to say anything. It's none of their business if you don’t want it to be and if they have a problem with it, too bad.” Yeah, that is a fact. But I wish I didn't have to think so hard about how to respond to something so unimportant. Am I making things more complicated than they need to be?

Life in an Institution - Where will YOU end up?

A Matter of Civil Rights

I have said time and time again, the disabled are deserving of protection of their rights not because we should feel sorry for them but because they have a RIGHT to them. The Medicaid uproar going on in Congress and local governments is not a medical issue, it is a CIVIL RIGHTS issue and a SOCIAL issue. People who have disabilities are treated as second-class citizens and even as sub-human in extreme (and very real) cases and so many times it is gotten away with because they are the least able to defend themselves. Recall the Iowa turkey plant that abused mentally disabled workers for decades. 

How would our society (yes, I'm talking about you and where you live and who you hang out with) look today if the revolution started by Rev. Martin Luther King, Jr., among others, had not taken place. When you think about how it was back then - "colored" and "white" separations, rear entrances for non-whites, standing room only for blacks, all-white juries - does it look normal to you? Does it seem like that should be the way it is? Do you, right now, today, think that MLK was a trouble-maker who should have quieted down and accepted the "separate but equal" laws because they were fine and didn't seem to cause you any problems? If you don't agree with that notion as it pertains to MLK back in the 60's then why in the world are you allowing for inequalities that are alive and well today?? Why is it that the disabled are ignored, mistreated, killed and locked away in institutions for no other reason in many cases than they just had nowhere else to go? That's ok with you?

Institution Life - Now THAT'S Living!

Tell you what -- let's imagine that you lose your job and can't afford to pay for your home or apartment and all of your relatives (if you even have a family) are too old, too busy or too broke themselves to let you live with them for free. They also can't buy you food to eat or clothes and shoes to wear. The homeless shelter is full, so you can't go there but they wouldn't have taken you anyway because you're a bit too much to handle since you have a medical condition that requires medication.

We're gonna put you in an institution. At least there you'll get the medication, right? Well the doctors there are overburdened with the number of patients they are supposed to keep track of so your file got lost and your prescription was never sent to the pharmacy and it's on hold because all the paperwork you filled out to try to get free medicine got mixed up so now it will be another month on top of the 6 weeks you've already been waiting...But at least you'll have clothes, right? Well, the clothes you managed to bring with you in your suitcase was fine but now it's been a few months and the laundry at the institution lost some of your stuff (or your roommates stole it) so you'll have to make do with your dwindling stash. Not sure what's gonna happen when the seasons change, though. At least you'll have 3 meals a day, right? MMMMMMmmmm, love that institution food! Gotta eat what you're given , when it's given to you and you better enjoy it because who knows what comes next! At least you'll have a roof over your head. Yes, 4 walls and a roof. Can't leave when you want, can't see friends when you want (if you manage to keep any), can't get up when you want, can't go to sleep when you want. Sounds like a dream come true!

Attitudes THEN vs NOW

Understand that a huuuge number of American citizens of the 1960's wished the whole thing would just go away. So many rolled their eyes and said, "There THEY go again.." So many did much worse things - lynchings, beatings, robberies, intimidating, just to name a few. Can you see yourself having that attitude back then? So why is it ok to be that way now?

"To institutionalize a disabled American costs four times as much than to give assistance for independent living. This issue is about civil rights, not about medicine. People who have the ability to live in integrated, affordable and accessible housing should have the right to do so."
-Actor Noah Wyle

Disabled among those arrested at Capitol protest