Americans with Disabilities Act (ADA)

On July 26, 2015, we will celebrate the 25th anniversary of the passage of the Americans with Disabilities Act (ADA) signed into law by President George H.W. Bush in 1990. It is one of the most comprehensive pieces of legislation for the disability community. It prohibits discrimination on the basis of disability in employment, public services provided by state and local governments, public services operated by private entities, transportation, commuter authorities, or telecommunications.

An excerpt from the National Council on Disability (NCD) report:

Living in the community with family and friends, working at a typical job in a regular business, and participating in community affairs is a right of citizenship, not a privilege for individuals with disabilities, as for all Americans. This right was confirmed with the passage of the Americans with Disabilities Act in 1990, affirmed with the 1999 Supreme Court’s Olmstead decision, and repeatedly reaffirmed in the years since that landmark decision. 

Disability rights are a CIVIL RIGHTS issue. Accessibility to public places & social programs, equality in employment practices and education – these are all federally protected rights for every person in the United States, including those with disabilities. We must stop viewing individuals who are disabled as subhuman or charity cases. Having ramps and elevators installed at rec centers; having ample aisle space at department stores and restaurants; providing larger stalls with handrails in public bathrooms – these are not things that people with disabilities should feel grateful for. It is not a privilege to have appropriate supports or removals of barriers. It is the LAW.

Forward RISE is a NYS nonprofit committed to the real inclusion of people with disabilities through knowledge-sharing workshops and inclusive social experiences.

http://forwardrise.org/

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.

*************************************************

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. 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

CHECK OUT THIS POST ON 1800WHEELCHAIR.COM !

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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

Accessibilty Arcade

An accessible arcade – Accessibilty Arcade – is open for all gamers in the Martin Luther King Jr. Memorial Library in D.C. The idea of one had been showcased in the past but it’s a permanent fixture developed by The Ablegamers Foundation that can be enjoyed by visitors. 

Why is this so important? 

Glad you asked! 

First, it’s important to individuals with limitations (and their families) to be able to enjoy the same type of good stuff that you & I take for granted. Me? Not much of a gamer. But I have the option to not be one. With this type of technology, thousands of people (if not more) now have the option to not be a gamer, like me.  =D

Another reason this is great stuff is because beyond the fun of playing there’s the therapeutic aspect. Hand-eye coordination is something that has often been touted by defenders of gaming when non-gamers commented on the time wasted in front of the screen (I would never). And it’s true. Gaming offers a fun way to improve cognitive ability as well as fine, and sometimes gross, motor skills, depending on the type of game.

So play on, playas! 

Check out some images in this article: Life Labs Attends Launch of Ablegamers Accessibility Arcade 

UPDATE:
UCP’s Life Labs has recently won a CVS Community Grant that will help to build a prototype mobile accessible gaming station in partnership with the AbleGamers Foundation. Read more about it here.

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!

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.

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?