Disaboom darrenhillock Blog

Is back of wheelchair a good place for everyone's stuff?

darrenhillock — Wed, 24 Sep 2008 12:35:00 GMT

If you are just a sometimes wheelchair user, like say at an airport, have you ever had to carry your stuff awkwardly on your lap while using a borrowed chair? If so then you're probably glad to hear that Hartsfield-Jackson Atlanta International has retrofitted some 135 airport wheelchairs with rear luggage holders. The idea is that people using the airport's chairs can stash their stuff in the back, instead of on their laps.
This seemed like a natural to me, but for a reason I admit is something that I'm a little embarrassed about.
Our teen son, the wheelchair user in our household, is always carrying a lot of stuff for other people on his wheelchair. On big shopping trips, bags inevitably get hung on the back of his chair -- sometimes coats too in a mall. At the beach, he likely will be carrying down to the sand a bag of toys or maybe the snacks. Go apple picking? Guess who carries the bag back to the car.
When I have reflected on this behavior of ours, I have sometimes felt bad. Are we infringing on his space and taking advantage of the fact that he really can't complain about his burden even if he wanted too?
But then I remember that we have always tried to keep thing as normal as possible with Marcus. Looked at through that filter, lugging the stuff on the back of his chair doesn't seem so bad. Hey, if he were a normally-abled 16 year old, he'd be carrying the bags anyway, wouldn't he?

photo courtesy of Hartsfield-Jackson airport

Can boats have universal design too?

darrenhillock — Fri, 12 Sep 2008 13:09:00 GMT

Universal design is most often a concept applied to buildings. But there are those at work to try to bring the idea of design for everyone to other arenas -- like boats.
Boats might be the last frontier for accessibility. Just the act of even getting on and off a boat can be an adventure for someone who uses a wheelchair, or even just someone who has trouble lifting their legs or other mobility limitations. We've experienced it ourselves. For example, I remember carrying our son -- a wheelchair user -- up and down a ramp for a tour boat operating from Chicago's Navy Pier. Then again, I remember also being able to roll right on to another tour boat in New York via an almost flat ramp.
That's why I was really cheered to learn that Scott Rains, inclusive travel expert and blogger, and Sherri Backstrom, director, Waypoint Yacht Charter Services, Bellingham, Wash., are working on a bringing further exposure to a set of principles bringing Universal Design to the water.
A quote from a draft of the statement of the principles to be published soon:

"Seaworthiness is a measure of the fit between the environment a watercraft must navigate and the ability of humans to use that craft for their own purposes. Universal Design captures this essential dynamic at the core of seaworthiness."

The hopes appears to be to get these principles applied to craft from kayaks to cruise ships. The opening up of recreational and transportation alternatives if more Universal Design was incorporated into watercraft would be tremendous. And as with all universal design efforts, it would not be so much an accommodation that has to be made, but something that is seamless and just is there.

I wish Scott and Sherri every success in this endeavor.

Photo of Scott Rains

Would you want your wheelchair wheels to collapse?

darrenhillock — Thu, 11 Sep 2008 12:55:00 GMT

Certainly one of the frustrations of traveling with a wheelchair is when you have to put the thing somewhere other than under your body in a vehicle. Like on a plane or a cab or in a car or on a train. Even the most collapsible of wheelchairs still don't collapse all that much for two big reasons -- the main wheels.
But a former art student in the UK has invented a wheel that if applied to wheelchairs would really cut down on the space needed to stow a wheelchair.
Duncan Fitzsimons originally created his folding wheel for use on bicycles while a student at the Royal College of Arts. Somewhere along the line he started looking into its application for wheelchairs too. (For a photo of how it might work with a wheelchair, see a photo at his Web site).
I can think of a lot of applications where this would come in handy. Could more wheelchairs be stowed in passenger compartments of planes if they folded more compactly? When we travel by van for family road trips of extended length, we have our son, a wheelchair user, transfer to one of the van's seats. His wheelchair goes along side, fully assembled and taking up a lot of space because after all breaking it down wouldn't really help. But if we could quickly and conveniently fold down the wheels, knowing we could flip them back in a snap, we would definitely gain some storage space -- which with five of us is at a premium right now.
Apparently the wheel is not being actively sold by manufacturer for wheelchair use yet. if it does come to market sometime, I think there will be buyers out there.

Would this invention help you? Leave a comment.

Palin's identity with PwD will take time to grow

darrenhillock — Sun, 07 Sep 2008 23:24:00 GMT

In a recent post I tried to articulate the disconnect I was seeing between GOP vice presidential candidate Sarah Palin and the community of people with disabilities. Palin's youngest child, a 5-month old boy, has Down syndrome. While I was hopeful that that would give her identity with PwD and maybe even energize her to advocate for them in her powerful position as Alaska governor and now vp candidate, I was mostly just seeing her child linked with her strict pro-life stance. Admittedly, the issue was deeper than I mined in my post, mostly because I wasn't up to the eloquence needed to articulate the issue.

But novelist Ellen Crosby, in this column, nailed it.

A quote:

"How much better it would be if we could see past the hyper-toxic subject of abortion in this election and let Sarah and Todd Palin's decision spotlight a topic far from our national consciousness: the needs of Americans with disabilities. They are our country's most underserved, neglected and marginalized minority."

I recommend reading the whole piece.

It's a little early to see how this will play out. Right now, it seems like the media is letting the pendulum swing back to not talking about any issue even remotely connected to the Palin family. And Plain herself has only recently begun granting extensive issues where such topics might be explored some more.

The key is that if Palin remains on the national scene because she wins in November or is a candidate for higher office again, her identity with the PwD community will be evolving, just as her understanding of the challenges and the needs of a life with disabilities grows along with her son. That's going to take time as is telling whether she will be able to blossom into the national political advocate the community really could use.

Palin says she will advocate for PwDs

darrenhillock — Fri, 05 Sep 2008 05:08:00 GMT

Well Sarah Palin showed me. My last post about her candidacy fretted that she seemed to have allowed her baby son, who has Down syndrome, to be associated more with her pro-life stance than with disability rights. What you always seemed to hear when the subject came up was that her having her youngest son in April -- though she knew ahead of time about his Downs -- was proof of her pro-life credentials. It seemed like the idea that she might have some special insights into the community of people with disabilities never came up.
I doubt that she had read my blog. And it's even more unlikely that if she had that it would have influenced what she decided to say in her speech to the Republican convention this week. But when I heard the following I almost thought it had:

"And children with special needs inspire a special love.

To the families of special-needs children all across this country, I have a message: For years, you sought to make America a more welcoming place for your sons and daughters.

I pledge to you that if we are elected, you will have a friend and advocate in the White House."

Overall, I thought that the tone of Palin's speech was tiring, all the snipping and bragging. But I have to admit I have heard very few politicians make such a straightforward and explicit pledge to the community of people with disabilities. It alone doesn't qualify her to be vice president, but it was a refreshing change.
Perhaps after this start, such an appeal -- and some real action to back it up -- will become a staple of convention and stump speeches from both parties for years to come.

Palin's child linked with pro-life stance, not disability rights

darrenhillock — Mon, 01 Sep 2008 03:06:00 GMT

The thing I've heard about Sarah Palin, John McCain's choice to join him on the Republican ticket as vice president, that's most interesting to me likely is the same as will be the most interesting to you. It has nothing to do with salmon fishing, caribou hunting or her looks.
She has a child, a baby, with Down Syndrome.
That's interesting to me for one because I can't remember it really being the case before with a national candidate at this level. It's even more interesting to me because my first thought was wow, this might be a great opportunity for bringing the rights of the developmentally disabled into the national spotlight.
So far, not so much. Seemingly every time I hear Palin's baby, four-month old Trig, mentioned it is as an indicator of her strong commitment to her pro life stance for not terminating her pregnancy when she knew the baby had Down syndrome. Commendable as this is, the linkage is more to the hot potato issue of abortion rights than to disability rights.
To her credit I have not heard Palin herself say anything that didn't pass the test. When talking of her pregnancy, she says she could have never considered terminating it and loves her baby. It's usually pundits -- and by extension the party operatives that have whispered in their ear -- who make the link to the pro-life stance.
The verdict is out and Palin is brand new on the national scene. We should give her time to grow as both a parent of a child with a disability and as a political figure who can make a difference in issues that are near and dear to the community of people with disabilities. Her suitability -- and that of her running mate -- goes beyond this issue. She may not win and I'm not sure she even should. Personally, I don;'t stand with most of what her party stands for in the presidential election.
But we can always use another supporter, and one with this intimate connection in high places could be very powerful indeed.

Don't balance your budget on my disabled kid's back!

darrenhillock — Fri, 29 Aug 2008 13:33:00 GMT

The following statement in a newspaper Web site column by a state representative -- thankfully not in the state I live in -- really irked me. In the column, Rep. Chris Nevins is explaining New Hampshire's state's budget mess and writing that cuts to balance the budget could come in a range of areas:

"Other suggestions are to cut $ 2.5 million spent on children placed in special programs by the court; $1 million spent on severely disabled students; and $2.5 million in aid to the University System of NH. But hey, we have to cut somewhere!"

How did educating severly disabled students become a legitimate place to trim a governmental budget? Well, I think I know how, but it's outrageous nonetheless.
It's kind of distrubing how often you hear the basic sentiment that severely disabled -- especially cognitively disabled -- students don't need school.
Sometimes, I honestly think it's innocent enough. During the school year, knowing our son is 16 -- firmly still of school age - people will ask "Does he go to school?" You want to answer something like "Well yeah expect on organized 'ditch days.' Doesn't your 16 year old go to school?'
Other times it's more malicious. Remarks like "why do we waste the money educating kids like that?" Of course these have not usually been made to our faces, but my wife and I have heard them anyway. Apparently some New Hampshire legislators or bueraucrats fall into this category.
I should point out that Nevins doesn't necessarily advocate that particular cut to the state budget in his column. In fact, my sense is that he includes it as an example of the difficulty in solving a state government budget crisis. Sort of like saying "See there's nowhere good to cut here."
But if you're reading this and you hadn't really thought about the issue before, remember this: Education means different things to different people. Your kids have their education needs. Maybe he needs to learn algebra so he can be an engineer or accounting so she can be a middle manager. My teen needs to learn to use the toilet and feed himself better. Both are educational processes and the state is supposed to be providing education.
Public education can't pick and choose who it can educate -- even in a budget crisis.

Photo by PPdigital via morguefile.com

New ADA updates need champions

darrenhillock — Fri, 29 Aug 2008 03:58:00 GMT

Sports stadiums. Courthouses. Bowling alleys. Even miniature golf courses.
These are just some of the venues bracing for the impact of the new proposed updates to the Americans with Disabilities Act right now working their way through the process of becoming the law of the land.
There's angst, of course. There's concerns about the cost of meeting the new requirments and there's concern about being socked with a lawsuit. From the other side, there's also some concern that the new requirments are not clear enough or do not go far enough in assuring equal access.
My sympathy for those who complain about how onerous this will be is limited. This is especially so for me when it comes to new construction of what are essentially public structures, liek the examples above. Access should be considered with new construction, that is when it is the cheapest to address. It might be a touch more expensive. But what it really takes most of all is the commitment and foresight to make it happen. Unfortunately, the state of society is still such that the government still has to provide the foresight on access.
There's another message I'd like to send to those building or substantially renovating a new commercial structure. Everything you do to improve access in your new facility has this one benefit -- a bigger customer base.
There will be plenty of critics. What these regulations will need are champions and people willing to speak up for why they are needed. That people is us.

Rolling to a better understanding

darrenhillock — Wed, 27 Aug 2008 13:43:00 GMT

The old saying about walking a mile in another's shoes is true enough. Having someone experience what you experience is a true way to understanding, maybe even empathy.
Achieving this kind of understanding, I think, can be especially useful for people with disabilities. Not because people with disabilities need sympathy. But because an understanding of what it takes to live life can be useful to others, for example when that extra public expenditure is needed.
The transforming power of even the simplest acts can be really impressive. A recent situation with my family illustrates what I mean.
My wife and a friend of hers and their respective children headed out recently to a nearby theme park. We have seasons passes and it was bring a friend for free day so it was a bargain. Anyway, for some reason, my wife's friend offered to push our son, Marcus, in his wheelchair for a while. She told my wife it looked like good exercise. Well, it is for the body and, as it turns out for the mind too. After navigating some curbs and other obstacles it wasn't long before this woman was also commenting to my wife about the need for better access. "You must go through this all the time," she said. And this was in a place that actually is fairly well laid out for wheelchairs in many cases.
Now my wife's friend is no mover and shaker in town that is going to suddenly bring down a wave of better accessibility on our community with her clout. But I do believe she better understands one aspect of living with a disability that she did not before. And it's likely her attitude about funding curb cuts or ramps or maybe even an elevator in a school building will not be the same from here on out.
Maybe we should all have roll your neighbor days to try to expand this concept.

Should the disapproving stares stop you from traveling?

darrenhillock — Wed, 30 Jul 2008 05:26:00 GMT

Family travel writer Eileen Ogintz has an excellent column at Smarter Travel about traveling with children with autism. I think you'll find it worthwhile and helpful even if you're not in the exact situation described.
For example, Eileen relates the story of parents of autistic children having to deal with their children getting upset in public while the stares of the disapproving public bear down on them.
Though our son is not autistic, he certainly has brought down some of those disapproving stares from time to time -- sometimes even when he's happy.
Especially when he was younger, Marcus was prone to having an outburst if he just was not having a good day neurologically. He'd cry and be hard to console. Sometimes his timing for these episodes was bad.
Marcus has the added challenge of also being disruptive sometimes not when he's upset or not feeling good but when he's really happy. One of his happy shouts out of the blue after a period of being quiet can startle at 20 yards. While he does have seizures, he's generally not having one when he starts rocking and banging in his wheelchair, though I'm sure people may think that's what's going on. That's just more happy Marcus.
Ogintz relates the story of one mom who hands out cards explaining her child's condition. That might work for some. But over the years my wife and I have just come to figure that we need to react appropriately to Marcus -- good mood or bad -- and most people will figure out what's going on. And those that don't, well, we can't worry about them.
I suppose Marcus gives us one advantage in these situations. Because of his physical disabilities, including using a wheelchair, and his severe developmental disabilities that also are pretty clear after a short time, I think people cut him and us more of a break in some situations. It must be a lot harder with a child who's disabilities are not so apparent, like the situations described in the story.
But the takeaway lesson from this column and hopefully from my own ramblings is it's worth the effort for you to still travel and do things out and about, even if it's challenging sometimes. Your child benefits, your family benefits and society benefits.

Should it cost some less to get over a bridge?

darrenhillock — Wed, 16 Jul 2008 13:19:00 GMT

It's going t o cost you an extra $1 to cross the Golden Gate bridge starting Sept. 1
If you're disabled, that'll be an extra $1.50
Now before you go getting too outraged, let me point out that after the increases, the cash toll for a disabled person -- $3 -- is half of what it is for everyone else -- $6.
Hey, everyone loves a discount. But the question for me is why is this two-tier system being used in the first place? Is it just me -- am I thinking too much -- or is this kind of patronizing?
A lower fee might be the right move if there was something about the experience that might be diminshed by one's disability and was just inherent in the design or construction of something. Say a theme park where limited mobility might keep one from even entering and enjoying many of the rides or attractions. Diminished experience, smaller fee.
I'll admit I have never been to the Golden Gate Bridge. So maybe there's something about the situation that I'm missing. But I'm figuring you use the bridge in almost exactly the same way if you have a disability or if you do not. In the end, you get from "point A" to "point B" without getting wet from "water c" in between.
To me the lower fee seems like an unfortunate remnant of the "handicapped," as in cap in hand, attitude toward people with disabilities.

I can understand not militantly fighting this discount and others like it as well. Hey if they're giving it, I'm taking it if I qualify. But I can think of better ways to reach out to the disabled community, if that's what they are trying to do here.
For example, I'd take equal fees along with equal access any day.

Photos of said bridge by (top) Ryan Gallagher and lower by Kevin Connors, both via morgueFile.com

Are you seeing beach wheelchairs around?

darrenhillock — Thu, 10 Jul 2008 12:57:00 GMT

Are beach wheelchairs making a surge in popularity?
This unnamed columnist seems to suggest they are. She mentions that she saw beach wheelchairs in use on a recent beach vacation. She also said the hotel she stayed in had one available. Those are both positive signs.
My family is made up of beach lovers. Beach wheelchairs took us a little while to discover. Though we have found one at our favorite beach location in a very convenient spot for us, I would say it is still pretty rare for us to see someone else using one. The columnist had a chair available at the hotel she stayed at. To my experience and research, that is also still a pretty unusual situation, though I don't really understand why. Yes a beach wheelchair is not cheap. In fact, they are pricey enough -- at least a couple thousand dollars a piece - to discourage most people from owning their own. They also are bulky to transport due to their inherent design, with big balloon, sand-traversing tires and all.
What really makes sense is to have beach wheelchairs at the destination so they don't have to be purchased by individuals for limited use or transported to a vacation site. Right now, that seems to mean fire departments, life-saving services, chambers of commerce and other such entities having a chair or two to lend. In the future, my hope is that more hotels and resorts will see this as an amenity they can provide -- and an extension of the work they do on accessibility within their facility -- and obtain their own beach wheelchairs for the use of their guests.

Photo by Darren Hillock of a beach wheelchair his son has used on recent vacations in North Carolina.

Who should have to notify arilines about accomodations?

darrenhillock — Mon, 30 Jun 2008 16:11:00 GMT

It seems like airlines, especially in Europe, pin a lot of their ability to deal with people with mobility disabilities on getting notification.
Notifying an airline ahead of time about your need for certain accommodations is all fine and good if you are the one making the arrangements. But what about if you use a travel agent? Whose responsibility is notification then?
A new European Union regulation makes it clear: notification for mobility issues is the travel agent's responsibility.
This article explains thta the definition of who is effected by this regulation -- which kicks in after July 26 -- is broad. Included are not just those who people would presume are permanently disabled, but also the temporarily disabled -- people who have broken limbs or are pregnant for example.
Under the law, travel agents will have to notify airlines about the mobility needs of their clients 48 hours before departure. The notification can be done through a variety of means.
If the traveler doesn't feel this is handled correctly, they can make a complaint to the Disability Rights Commission.
This seems to me like this is a reasonable law. If you're not the one who is making the actual arrangements, the timing etc. of notification might get kind of tricky. The travel agent ought to do it. And such notification can be key in getting the right accommodations.

Kudos to the EU for having the foresight to put this into the books.

You can walk or wheel in the path of the first flight

darrenhillock — Mon, 30 Jun 2008 04:48:00 GMT

My family and I just got back from a vacation that included an opportunity to visit a historical site that is the very definition of humble beginnings that later developed into something world changing. I'm talking about the site of the Wright Brothers first airplane flight in Kill Devil Hills, North Carolina.
And though the Wright Brothers story is all about getting airborne, people with mobility disabilities should be able to follow along in the path of the first flight like anyone, thanks to some thoughtful placement of simple mobility assistance devices.
The Wright Brothers National Memorial, which is run by the National Park Service, commemorates the place where man first flew in an engine-powered plane. There's a visitors center that includes replicas of the plane used for the first flight and of a glider the brothers from Ohio used to test some of the principals of flight. The large stone memorial up on the hill is visible from far off and offers a beautiful view. But perhaps the most inspiring part of the site is where the flights actually happened. Marked with stone markers are the place where the lift off happened and then the landing spots of the four flights attempted on the fateful day of Dec. 17, 1903. The path out to the markers is thoughtfully paved, in a way, with a series of rubber screens placed over the sand. We wheeled our wheelchair using son all the way down and back without incident. When you walk down from the first landing to the fourth you really appreciate how quickly these men perfected what they had done.
The walk to the memorial up on Kill Devil Hill might be more of a challenge. We didn't take Marcus up. The paths looked like they might be OK for a strenuous push up, but we were concerned about how much effort it might take to come back down without having Marcus's chair get away from us. There's no info on the NPS Web site about just what sort of grade these paths present.
Oh yeah, the town of Kill Devil Hills also happens to be a great vacation spot, and one our family has been visiting for the last few summers and which I visited often as a kid with my family. It's hallmarks are nice wide beaches and an amount of visitors even in the high season that is much less than a Myrtle Beach or Florida.
That's probably because, ironically, it's not particularly easy to fly to the Outer Banks. Go figure.

Photos by Darren Hillock. Top, the screened and very wheelable path along the path of the first flights. Bottom, the Wright Memorial.

Dubai seeking to increase tourism accessibility

darrenhillock — Fri, 30 May 2008 13:00:00 GMT

Dubai a leader in accessible tourism? Well I must admit I've never been even near there, so I don't know first hand either way. But if realizing the need is an important step, well then Dubai toruism officials are definitley on the road to making that statement a reality.

At the recent Fourth International Tourism Development Forum for People with Special Needs held under the patronage of Shaikh Ahmed bin Saeed Al Maktoum, the need to address people with disabilities when developing the country's tourism potential. “As we continue to grow the tourism sector here in Arabia, it is not only important but crucial to address and cater for the needs and requirements of the disabled,” said Peter van Driessel, vice president of the Dubai Skal Chapter.

I see this as great evidence of how the awareness of accomodating people with special needs is spreading to every corner of the travel industry. There's a simple economic argument to be made here. Being open to people with disabilites that like to travel can greatly increase your customer base. The example given for Dubai was an additional $3 billion a year. Now think about the potential upside of all the places in the world that welcome tourists getting the message. Yes it is implied here that accomodating people with disabilites will take some investment. But to make Dubai fit I'd wager will come nowhere near the $3 billion it could realize in additonal revenue in a single year.

In the tourism biz, being accessible to all is just good business.