A conversation with Patrick a few days ago reminded me of a post I wrote in 2004, so I thought I’d add a little to it and bring it up to date.  Original post is down below.

The conversation was pretty innocuous, talking about the way the sidewalks were totally impassable due to the snow being plowed onto them creating mega berms that will take ages to be cleared, and how it meant we’d have to travel on the road itself to reach the stores.

As an aside, Pat let slip that at one of the Powwows we attended a few years ago, someone had come up to him and said “You know you’re not really dancing, don’t you?”.

I should explain a little.

We go to powwows on a regular basis, those that we can reach in the Metro DC area.  Both of us go out during inter-tribal dances.  Now, we know we don’t “dance” the way everyone else does, physically – we can’t (although I have a design for a fancy shawl rig for my manual chair in mind that might actually surprise some people!).  We know this as well as everyone else does.

But dancing in the circle isn’t just about the physical.  The arena is Sacred Space, dancing is also about what you bring into that space in your heart.

My Tank has its own regalia, which either tells my story, or for the Veteran’s Day Powwows at George Mason University carries regalia I created specifically as a Patriot Guard Rider to show honor to my brothers and sisters in arms.  That brings even more energy into that Sacred Space, with purpose.

The fact both of us are on wheels makes no difference to us – in some ways it amplifies and focuses us on that spiritual side of the dancing.  We don’t “just wiggle our controller joysticks around” randomly, we let the song the Drum sings and the energy of the dancers around us guide us, our chairs, and yes our bodies as they will.

And, I hope, the other dancers in the arena can join our energy to theirs as we do theirs to ours.  I still remember a pair of young dancers at one BAIC powwow in Baltimore dancing around the Tank as we went around the arena during an intertribal, making it and me part of their dance – even to jumping over my footplate with that grace and fearlessness of kids

Until Pat mentioned that remark, I hadn’t even really thought about the question “Are we dancing, or just playing?”.  I have a feeling the answer I’ll get from Rie if she reads this will be censored for language, but I have to ask myself, why would anyone ask it to begin with?

I think some of it goes back to the points I made all the way back in 2004, reprinted below.

The question Pat was asked was “You know you’re not really dancing?”, based on our not behaving as people expect wheelies to behave.  Did this person think that we should just be sitting off in the corner, out of sight and out of mind?  Worse, was he judging out matter of fact dancing against the dancing of everyone else and finding us wanting?

At the very least, he did actually say something, but I now wonder how many at Powwows share his question but are afraid to ask?

And that’s where the drive for political correctness really holds us back – How can we explain all of what I’ve written above to them, when we can’t be sure who has that question in their minds – or even if any of them have that question.  This “fear” surrounding people with disabilities created by political correctness holds us back far more than any pseudo-advantage political correctness is supposed to give us.

At the end of the day, my feeling on this (I won’t speak for Pat with it) is that I know in my heart why I enter the circle, and I know that the energy I offer is accepted where it matters.  If someone has a problem, they’re perfectly entitled to it, but as long as I continue to respect the Sacred Space, where is the problem?

When I first entered an arena at Powwow, it was after a lot of searching for answers along a similar vein – I knew I couldn’t physically dance as everyone else would, so I asked myself constantly would my going into the arena somehow be embarrassing or an insult to those dancers. Would I be able to reach that place people go when they dance in that Sacred Space?

Eventually I got my answer – it’s not about me. It’s about the dance. I’m not dancing for the people who are watching, I’m not dancing for me.

I’m dancing for my ancestors, my history, the people who matter to me, the people who need the energy, and (for me especially), for my brothers and sisters in arms who can’t be there.

So we handle it all as perfectly normal, everyday – we’re oblivious to the wheels we use instead of feet.

Hopefully, people will read this and understand that we’re not “too” normal.  We’re just like everyone else, we’d just like to be treated the same.

Originally Posted August 2004

---

It’’s kind of frightening to wonder if I might have blown a recent job interview by being too “normal”.

Most of the time, people seem to be very confused as to how they”re supposed to “behave” around people with disabilities, at least in my experience with someone in a wheelchair at any rate. There’’s been such an upsurge in “political correctness” that many people are concerned almost to the level of paranoia as to how to handle talking to disabled people.

For example. Is it politically correct to tell someone they have a really cool looking wheelchair? Is it politically correct to ask them questions about how hard it was to learn to use it when they first got it?

Is it politically correct to tell someone they have a really cool looking car, or a very nice outfit on that day? Is it politically correct to ask someone questions about how hard it was to learn to drive that powerful sportscar, or to say how “brave” someone is to go out wearing a particularly scandalous outfit – “I”d never dare go out in something like that”?

It all depends on the wheelie really, and the attitude of the questioner. But somehow we”ve managed to lose sight that someone could possibly ask such questions because they”re actually interested. The disabled community has somehow, in trying to combat the real discrimination out there, create an atmosphere of fear and paranoia that I believe is actually working against us. How? Because it prevents the only true way to battle discrimination – Education, showing people that we”re no different than they are.

When someone has to be concerned at a potential backlash for trying to learn more about us, who we are, why we”re that way, they”re never going to see how we maintain our dignity and humanity despite the obstacles we”re encountering. We”re always going to remain an “unknown” because we”ve somehow persuaded the world that to try to learn anything about us is rude, anti-social, bigoted, discriminatory, and worse. We”re isolating ourselves by creating a shield of ignorance that prevents others from finding out that we”re real people.

I”m kind of odd, really. Once I got used to the Tank (my Quantum Blast 650 – aptly nicknamed!), as far as my own image of myself was concerned, my feet were wheels, and my legs became 300 lbs of steel, plastic, and batteries. And that’’s as far as I notice the Tank – I pay as much attention to being in it as I did to being stood upright and walking when I could. I can”t change the fact that I”m in the Tank, so I just accepted it as being a part of my body, no more “different” than my legs and feet.

So for me, someone saying the Tank is a really cool looking powered chair (in purple no less) (which it is, by the way), it’’s the same as someone saying that I have pretty ankles (They do, and I do ). I”m not going to complain if someone pays me a compliment, and I”m certainly not going to complain if someone can wrap their head around the same fact of life I had to accept when I got the Tank – It’’s a part of me, but it doesn”t define me.

Perhaps that’’s the real problem in society … Discrimination wants to define wheelies as being “the person in the wheelchair”, with the emphasis on “the wheelchair”. I define myself as “the person in the wheelchair”, with the emphasis on “the person”. The problem is, the wheelchair is a part of me, so when people look at me, they”re scared they might cause offence, because of “political correctness”. The easiest solution for them is to tiptoe around me at every opportunity, which means they”ll never really get to know me, or be as at ease with this hunk of metal attached to my ass, as I am.

I don”t pay any attention to my Tank, although I”m quite proud to point out it’’s just so perfect (thanks to the wizardry of Mark E Smith) it even has a cup holder, and makes large holes in bedroom doors (don”t ask). But it seems to throw people for a loop that I don”t pay attention to it. They”re unsure how to handle a wheelie who is so matter-of-fact about an extension to their body. I don”t act the way wheelies are “supposed” to, that such topics are totally off limits, uncomfortable, or that if you bring it up I”m going to slap you with a discrimination suit. It’’s a part of me, it”ll always be a part of me, and you”re just going to have to deal with it. But you can”t deal with it if you don”t know about it, and are afraid to ask.

As long as we have this blanket attitude of “keep away” when it comes to discussing those things that are a -part- of who we are, we”ll never really remove discrimination. If we make such a big deal out of those things that -we- believe separate us from the able-bodied, then those things will always be a big deal to the able bodied. We have to demystify these things through education and starting to -act- like we”re normal people, or else discrimination will never leave – it”ll just stay hidden.

While we”re on the subject, BBC News Online has an amusing article about a pregant woman turned away from a nightclub by the moron on the door.

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• Helen Henderson: A wheelchair doesn’t make an employee perfect (thestar.com)

So it’s Sunday, the snows have stopped, and it’s time to begin digging out the ramp, front garden, and driveway.

The ramp is the dangerous part – we have to clear a spot, dump ice-melt where we’ve cleared, give it a few minutes, then move forwards.  Rise, repeat.

Thankfully we have some help with traction on the ramp, a friend several years ago laid down some wire mesh on one side that helps give our tires something to grip onto.

But it’s still a somewhat nervous experience, the rail on the left has stopped chairs from going over the side several times!

It looks like we’re going to have to then go dig a trench from driveway all the way up the road until we reach a main street (2 blocks) because our local town doesn’t seem to have bothered to send out snowplows this year.

It’s funny, we hear people in DC are up in arms that they only saw one snowplow.  We haven’t seen any.

Correction, I’ve seen one – an MNCPCC snowplow the other side of the river clearing a path to the recreation center.

People with working legs can still get through the snow (as our neighbors have proven as they’ve headed off this morning) but for someone in a wheelchair, we’re a lot more dependent on those plows.  DC residents only saw one and they want to complain?

Meh.

The true irony is going to be if the Town finally gets around to sending out a snowplow – the chances are it’ll just go and dump a 4′ berm of snow right on top of the trench we’re going to have to dig out so we can head up the street.

Anyone reading this please take note of the difficulties I’m trying to explain to you here – if you got hit by the snows, and you have a neighbor who is in a wheelchair, take a moment to check around to see how the snow might be trapping them today, and help them out.

You might be able to get through it and off about your business to do your Christmas shopping, or even grocery shopping through snowdrifts – they might not.

Update @ 1310:
Sent an email to the Mayor of the Town asking whether or not the Department of Public Works is actually running the plows, no reply as yet.  I sent one to the Town’s general email address last night, but got no reply to that either.

Update @ 1418:
Got a reply back from the Mayor:
“We are scrambling because of the size of the storm and depth of the snow.  We are now getting to the secondary street and hope to get to you this afternoon.”

Update @ 1900:
Still no plow – but it looks like the top half of the street was plowed at some point.  I wonder what the definition of “secondary street” is?  The logic seems frakked up – Clear the streets for the people who can get through the snow even if it’s unplowed, but not clear the streets for the people who absolutely cannot go anywhere unless it’s been done?

Update @ 0830 Dec 12th:
Road is plowed finally, some sort of chemical ice-melt was used it appears.  We’re not celebrating yet as there’s still one section that will keep us stuck here if it wasn’t cleared.  I guess we’ll find out soon enough.

OK, pics time.  We’ll update it as we go along, so you can see the fun we’re having.

(That was sarcasm)

Comments

• December 20, 2009, Tweets that mention The Big Dig Begins » Moonwolf’s Lair -- Topsy.com writes: [...] This post was mentioned on Twitter by Moon Wolf and Moon Wolf, Moon Wolf. Moon Wolf said: Blog: The Big Dig Begins http://bit.ly/83RXSY #snowstorm @wusa9 [...]
• December 26, 2009, Ken St. Andre (4 comments) writes: Ha! I laugh at your frozen toes. Sane people live in places like Arizona or California where there is no snow.
• December 26, 2009, Moonwolf (11 comments) writes: You always did have the strangest definition of "sane" Ken ... Californians??? Yeesh!!!

Disclosure: I’m one of the founder members of DC ParaTransit Info, which has monitored and reported on MetroAccess and related accessible transportation issues in the DC Metro Area for many years.

Updated: 4:46pm 12/12/09
The Washington Post has reported on who it says the reorganization affects. and it won’t affect MetroAccess.  Yay! (Heads-up courtesy of the Greater Greater Washington blog)

It’s all over the news this evening.  After Senator Barbara A. Mikulski (D-Md.) tore into Metro this past week over safety concerns, DC Council Member and Metro board Chairman Jim Graham stepped up and announced he was working with General Manager John B. Catoe Jr. to, as Councilman Graham stated, “change Metro, and it’s going to happen very rapidly”.

This comes on the heels of another series of well publicized unwelcome revelations of incidents regarding Metro operations.

Given all the information to hand, Senator Mikulski’s ire towards Metro with regards to safety seems fully deserved.

However, most of those safety issues raised concerned MetroRail and MetroBus – not MetroAccess, the ParaTransit service operated under contract by MV Transit to WMATA (Metro).

MetroAccess is the legally mandated service that provides equivalent transportation to people with disabilities.

MetroAccess has long seemed to have been viewed, by the general public at least, as being a financial burden.  I believe the common perception is that MetroAccess’ ridership is a very miniscule minority compared to the able-bodied riders of the system, but the costs per passenger are viewed as being higher.

Which gives me a minor concern.  It took us many years as a community before Metro managed to put together a combination that resolved or reduced a whole host of problems associated with MetroAccess.

That combination is the team of Christian Kent, who was made an Assistant General Manager and wrangles the accessibility programs of Metro as a whole, and Selene Faer Dalton-Kumins, who was brought in as the Director of the Office of MetroAccess Service.

It’s taken time, effort, and several missteps.  Things are still not entirely perfect, but they’re far better than they were a few years ago – and I believe that the teams they assembled can bring the service quality forwards to meet not only the letter of the law requiring ParaTransit service, but also the spirit.

It has reached the stage where we don’t need to highlight issues with MetroAccess nearly as often – because things had begun to run relatively smoothly at last.

But I do wonder if either (or both) Christian or Selene is at risk with this management shake-up to come?

Even though they have (to my knowledge) little involvement with the issues Senator Mikulski highlighted, that isn’t any guarantee they will be allowed to continue bringing MetroAccess up to par.

So I sincerely hope that this planned shake-up at the top at Metro won’t deprive the MetroAccess ridership of two of our greatest assets and allies within Metro’s upper echelons.

Given their lack of involvement in the issues Senator Mikulski raised, I would seriously question why they were part of such a reorganization should that come to pass.

I believe that removing them risks the changes and improvements to service for disabled riders in the DC Metro area beginning to falter when they are still in progress, a situation that could lead to a repeat of the chaos encountered in January of 2006.

I hope that doesn’t happen.

Fixing the safety concerns surrounding MetroRail and MetroBus is a necessary step – but I truly hope that the political pressure from on high doesn’t throw the baby out with the bathwater.

Yes, the disabled ridership might be a serious minority, and yes, the cost per passenger might be higher – but the service isn’t a convenience to us, it’s an absolute necessity.

Don’t start culling what seems to be the only part of Metro that is working and improving.

Golf isn’t a sport you usually associate with doping scandals, the use of performance-enhancing drugs, but that’s now changed with the news of Doug Barron, a PGA Tour player who has been suspended for a year.

His offense is to have taken beta blockers and artificial testosterone.

Artificial or natural testosterone has been used by other athletes because it preomotes muscle mass, and strength.

Beta blockers help enhance focus and concentration.

So, it looks like a slam dunk case of trying to cheat, right?

Not so fast

What if you consider that Doug Barron needs to take beta blockers for a heart condition, and testosterone because his natural levels are one fifth of those other males have in their system?

The CNN article, as is normal for “journalism” these days, makes a big deal with the title of its article, “Sex drive vs golf drive”, but the issues Doug Barron faces are much more involved and affect a large part of his day-to-day living, if he doesn’t take the meds.

Now comes the tricky part – If we agree that beta blockers and testosterone in healthy athletes are performance enhancing to gain an edge over their competitors, that’s cheating.  But if those meds are required for clearly laid out medical reasons, and their only effective “enhancement” for the athlete is to offset the debilitating effects of health conditions so the player can participate on a level playing ground, is that cheating?

The PGA Tour has faced a similar question before, back in 2000, when they were accused of breaching the ADA by Casey Martin, a case that went all the way to the United States Supreme Court which ruled in Martin’s favor (as had the lower courts before them).

Casey Martin had a degenerative disease that wasted away one of his legs.  He wanted to be able to use a cart to go between holes, since walking to all 18 would cause pain and extreme fatigue.  The PGA Tour declined, saying that walking was an essential part of professional golf – a view echoed at the time by such luminaries in the golfing world as Jack Nicklaus and Arnold Palmer.

That had me shaking my head.  it doesn’t require any sort of skill to walk between holes, you aren’t scored for how you walk – the game is about hitting that little white ball.

The Supreme Court obviously felt the same way, in their 7-2 ruling in favor of Casey Martin.

The tip of the iceberg

These cases in such a “gentle” game such as golf highlights something I believe few want to admit, a built-in automatic prejudice in professional sports against people with disabilities.

Athletes have been promoted for so long as being such “perfect specimens” of humans.

The current gossip-mill surrounding Tiger Woods is an example of this – people eagerly eat up every scrap of tabloid gossip about the private life of Tiger Woods, and the condemnations and expressions of disappointment for his alleged transgressions in his private life fill comments sections of tabloids and blogs everywhere.

People don’t like thinking their idols have flaws.

So for someone with a disability, or even a hint of being different, it appears professional sports really wishes you’d go away.  The whole system is set up to promote these perfect specimens of humanity – if you have a disability however, you’re screwed.

Admittedly, there are some sports where it’s against common sense for someone with a disability to compete – but even then common sense doesn’t always rule.

The common-sense assumption about Master Chief Carl Brashear was that a man with one leg couldn’t be a Navy diver – an assumption he blew right out of the water (no pun intended).

But the professional sporting world, geared as it is to displaying feats of prowess, skill, stamina, and strength, is uncomfortable with such examples that disprove the rule.

The Special Olympics is the sporting world’s way of trying to segregate disabled athletes from the “mainstream” ones.  Have a disability?  Oh, you can’t be in the Olympics, but the Special Olympics would be fairer for you.

Any disability.

Examples of the prejudice against non-standard humans in sports

A recent example, look at Oscar Pistorius, the South African sprinter who is missing both legs below the knee.  He uses specially designed “blades” for his prosthetic lower legs.

There were no rules against these legs when he first began to make a name for himself.  But right after the first time he took part in a professional meet, the International Association of Athletics Federations (IAAF) changed the rules in such a way they can only really be interpreted as being designed specifically to bar Pistorius from competing in the able-bodied contests.

IAAF, of course, stated that the rules change wasn’t aimed specifically at Pistorius – which is strange, I don’t know of any other athletes who use “any technical device that incorporates springs, wheels or any other element that provides a user with an advantage over another athlete not using such a device” (Pistorius’ legs are carbon fiber “springs”).

Then we also have Caster Semenya, another South African.  The way she was treated by IAAF is nothing short of scandalous in and of itself.  Whilst some might not consider she has any “disability” per se, the IAAF violated her intrinsic privacy in what’s been thought to be an attempt to intimidate her into dropping out of the Berlin World Championships.

IAAF’s stated reasons for demanding a gender test of Semenya, after the doping tests proved she wasn’t using any performance enhancing drugs presumably, was to determine if she had a “rare medical condition” giving her an unfair competitive advantage’.

Some might see it as they were looking for an excuse to disqualify her.  The leaking that she was being tested, the day she was supposed to run in the 800m, might be construed as a last ditch effort to railroad the girl into not participating, thereby preserving the illusion of “perfect specimens” in sports.

The problem is, the professional sporting world’s definition of “perfect specimen” seems to be exclusionary and elitist against any who have the skills, but perhaps not the “normal” body of their able-bodied peers.

“Advantage”?  Yeah right!

Having a hormone imbalance isn’t cheating, and doesn’t necessarily give an advantage – and even if it did, if a woman tests as a woman, she just happens to be built like an East German athlete from the Cold War, does that mean she should be disqualified from competing against other women?

Likewise, if someone is missing their legs, running hurts, not to mention the laws of physics do tend to negate any perceived advantage human-powered prosthetics might provide.

If you have a bad heart, and no testosterone, you’re not taking drugs to gain an unfair advantage – you’re taking them to offset your intrinsic health-related handicap – the same way using a cart between holes does.

(And why are male athletes never subjected to this gender test by IAAF?)

Perfection vs the perception of Imperfection

Professional sports doesn’t like anything messing up its image – and it’s just that, an image.

In the case of Casey Martin, the PGA Tour brought up that it would look bad if people saw him using a golf cart while everyone else walked.  Semenya’s appearance and the furore it caused is obvious.  Would IAAF have done a gender test if she’d looked “normal” for a woman?

Society looks upon athletes with something akin to adoration.  you need only look at the fans of professional athletes, be they football, baseball, golf, swimming, NASCAR, or anything else to see how much effect these athletes have on the general population.

As a result, professional sports have become entrenched in maintaining their image in line with that adoration – it means more asses on seats in stadia, more lucrative endorsement deals – money.

Anything that even looks like it might remotely jar this image of professional sports as being “perfect specimens” of mankind is squelched, isolated, segregated, and shunted into obscurity because such things, such “imperfect specimens”, damage the carefully crafted image professional sports bodies try to cultivate.

Think such subconscious prejudice doesn’t really exist in society?

When have you ever seen a car salesman in a wheelchair?

When have you seen a politician with missing limbs?

Know any Aspie CEO’s of Fortune 500 companies?  Or even just on the boards?

This isn’t about breaking down the barriers to improbable situations.  Someone in a wheelchair isn’t going to be able to play football for the NFL – there’s no way to make a reasonable level of accommodation to make it happen.

But that doesn’t preclude reasonable accomodations being made with such blanket disregard for the abilities of athletes who don’t fit this image of perfection.

Underlying Prejudices

Those that control professional sports don’t seem to think of reasonable accommodations for athletes with a disability.  In many cases, those bodies seem to feel they don’t have to make any accommodation, because an athlete with a disability has the segregated version of many sports to participate in instead.

This ideal that an athlete with a disability would be at a disadvantage against their able-bodied peers is in and of itself prejudicial.

I think some sporting bodies are perhaps victims of their own hype in search of the “perfect specimen”, they simple are unable to conceive that a disabled athlete can compete in such a situation and it be fair.

Judging from comments on websites related to the various people I’ve mentioned here, that certainly seems to be an undercurrent within society at large.

It gets worse when there exists some way for a disabled athlete to overcome any inherent disadvantage their disability causes in relation to their able-bodied peers.  Automatically, the presumption seems to be that any method that can bring the disabled athlete up to parity with their peers, must then automatically take that athlete’s ability beyond that of their peers.

In Semenya’s case, it looked a lot like IAAF had to find some reason why she had improved so much.  She tested clear for doping, so because she looked like a man, it appeared as if they automatically assumed that must be it.

Not once do they appear to have considered she might just have gotten that good on her own, and the results of their invasion of her most intimate privacy to prove it shows the depths professional sports can dive to in order to prove there must be an unfair advantage going on.

The same with Pistorius – even before scientists weighed in with data, the assumption was that his artificial legs, that made him as capable as his peers, must give him an unfair advantage beyond that level of parity.  They even re-wrote the rules with unseemly haste to exclude him, before they even saw any data (or looked for it).

The Future

Doug Barron isn’t the first professional athlete to suffer from this quest to keep professional sports the domain of the perfect specimens of humanity.  He won’t be the last, either.

The question is, how long will it be before professional sports wakes up and realizes people with disabilities don’t want to cheat – they generally just want to play on the same level as everyone else.

Given recent doping scandals, it’s the able-bodied athletes you have to watch out for, it seems.

Makes you wonder who are the better representatives for sports.

Originally Posted Dec 26 2007

Some disabilities have obvious effects, some don’t. In either case, it can be hard to explain to someone else just how disabilities can make you feel.

Enter one of *the* best articles on the subject, The Spoon Theory. I’ve been using this ever since I discovered it as a handout to give to people that gives them a better idea of just how draining disability *can* be.

It’s great reading, and handy to use! The rest of the site there’s not too shabby either

There’s nothing quite like a Powwow to help bring you back on track inside your own head – Especially when you go to two of them in the space of three days, both social ones.

The second one, George Mason University’s Veteran’s Day powwow, is going to be one of the “memorable” ones.

After two years of effort and work, and with the help of 10+ pounds of steel, I finally got to dance standing up (Well, dancing if you use a rather loose interpretation of “dancing”).

It was kind of funny to see the expressions on people’s faces, who are used to seeing me being 4′ tall (all people in wheelchairs are 4′ tall) as they got to see that I’m still 6′2″ tall when vertical

I’m kind of paying the price for being slightly … umm … stubborn, I may have pushed the envelope just a tad.  But it was certainly worth it – especially when I realized I was the tallest person in the circle all but one time (a drummer from Black Bear is only slightly taller than I am ).

But it was more than worth it.

Now I have to start re-interpreting the dances again though.  It was stubbornness at the idea that wheels meant I couldn’t dance in the arena that led me to try to come up with analogs in the chair.

If I keep working on building up stamina and strength enough to do more than one circuit of the arena before needing to sit again using the legs (that 10+ pounds of steel), that same stubbornness will help me rethink the dances again – it’s hard to sway and bounce using your knees and ankles when they’re locked into a solid straight line

But I have a feeling the same community spirit that helped me develop analogs in the chair will come forwards again, and people will come up with suggestions and helpful ideas on how to do it.

And on the subject of which, special gratitude goes to Rie, who had no idea what I planned until she saw me get up to tower over her, and responded to my plaintive “I need a crash course in dancing standing up so I don’t look like an idiot” request so readily

Also kudos to tainee for not letting me postpone the whole idea for another year as we got ready that morning

Of course, now I have a perfect excuse to get started on making new regalia – all my old dresses were designed to be used in my chair, and look daft if worn when vertical

Hopefully I can download the pictures from this weekend to my computer soon, and we can get them cleaned up and online – only, as usual, don’t expect any of them to feature me … I have a reputation to live down to, y’know!

Comments

• February 27, 2009, RiK (1 comments) writes: That's AWESOME stuff. It wasn't that long back you were proudly telling me you'd managed 30 steps.
• November 24, 2009, Moonwolf (11 comments) writes: Back then it was 10 ... With the legs I'm up to a mile and a half now - although I've only pushed it to that once, and it took me a couple of weeks to recover :P

As bad as the NHS in the UK can be, there are times when you get to hear about some damned good specialists.

In this case, the BBC News website reports on a 15-year old from Pontefract.

Tom Lemm fought cancer for three years, but a tumor in the upper part of his left arm meant surgeons were faced with having to amputate the entire arm, at the shoulder joint. Normally, amputating a limb at the joint (shoulder/hips) means the patient can’t use an artificial limb – there’s no stump left to attach one to.

I guess someone looked at the arm beforehand and realized that there was a large amount of it would be “wasted”, unaffected by the cancer but having to be removed in the process nonetheless.

Now I’m no orthopod, but even I can hazard a guess as to just how complicated their solution would end up being to implement.

The surgeons took the unaffected elbow, and tissue, to fashion a new shoulder joint, of sorts.

Of course, that’s no “replacement” for an arm, but it did change the outcome for the better. By taking the elbow, the surgeons were able to craft enough of a “shoulder” and stump so an artificial arm can be used in the future.

Perfect, no, but it’s got to be better for a 15-year old (or anyone else for that matter) than having nothing there at all.

According to the article, this type of operation has never been performed in the UK or Europe before, although it says it’s been done in Japan in the past. How effective it will be in the long run is up in the air, I guess.

I don’t usually have anything good to say about the NHS – but in this case, they’ve shown the doctors themselves still rank right up there!

I noticed this on the alt.support.mult-sclerosis Usenet group the other day (it was also cross-posted to alt.support.cancer.prostate), and figured it was worth reposting here.

Hi all,

You may remember I posted on here a few weeks ago asking for volunteers to be interviewed as part of a new product innovation programme which we’re undertaking for a leading provider of continence and bowel care solutions.

Firstly, thank you to those of you who got in touch and took part.

We’re now interested in hearing the thoughts of more people and are looking for volunteers who would be willing to fill in an anonymous, on-line survey about their use of continence and / or bowel care products. As before, we will pay each respondent a fee by way of a “thank you”.

We want to identify breakthrough solutions to bring about a major positive change in lifestyle for those living with multiple sclerosis. Completing this survey is one way you can get your needs for continence and bowel care in front of the manufacturers. Through previous research like this, Strategyn created one of the most successful medical products ever. We hope to repeat that success here.

Details are as follows:

The survey is open to anyone over 16 in the UK or US and who lives with multiple sclerosis.

We will pay each respondent a fee of £20 (or $40 if you live in the US) for a completed survey. Additionally, all names of respondents will be entered into a draw to win an extra £100 (or $200).

To qualify for the survey you must use one of the following solutions for continence or bowel care (if you don’t meet these criteria but know someone who does, please pass this message on to them).

Intermittent or indwelling catheters
Urine drainage bags (leg or night bags)
Penile sheaths
Vaginal guards
Incontinence pads
Bowel management products / solutions (anal plugs, anal irrigation systems, fecal collection bags, enemas, laxatives, suppositories, manual bowel stimulation)

If you think you would be interested in completing this survey and helping to develop the next generation of continence and bowel care products, please send me an email at:

uk@strategyn.com

In your email, please state whether you are from the UK or US and tell us that you have multiple sclerosis (we are also looking at other user groups).

We’ll then send you details of the survey in the coming days. Depending on which products you use, the survey will take 30-45 minutes to complete. You can complete this in one go or save it and return to it at a later time.

Hope to hear from you soon!

Nicki

Strategyn UK

I sent them an email, and got a response. As would be expected, there’s no indication of who the survey is being carried out on behalf of (other than it “is being undertaken on behalf of a leading manufacturer of continence care products”).

I repost it here in case anyone else is interested in participating.

Back in April 2008, I wrote about the work that was done on our nearby park by M-NCPCC.

Shortly after that entry, they got back to us via email, saying

This situation will be corrected and you will once again be able to access the pathway that leads under Riverdale Road.

Unfortunately, there’s apparently still been no movement on this, the railing still cuts right across the park from one side to the other – and, in fact, it’s even worse now once you get past this huge metal barrier, because subsidence has caused a great big crack to appear in an older section of sidewalk.

So, despite their acknowledging that they’ve put a huge barrier to accessibility up across the park, four months have gone by with nothing visible happening.

This begs the question – do we have to begin legal action before they will actually rectify their own accessibility failure?

I can understand their reticence not to do something that is based on common sense with regards to the slope on the other side of the bridge – though I seriously doubt they’re even remotely ADA compliant with that slope.

They’re more likely to pay exhorbitant amounts of money to professionals with degrees in every kind of engineering imaginable, do surveys, put it out to tender, bid it, rebid it, then muck around for several months before they just bow to the inevitable and put in a “hard” version of the switchback path people have already carved out in the dirt there.

But …

What’s the delay in figuring out they’ve gone and put a great big metal railing across the park on this side, and it needs a gap made in it?  I don’t know, not having all those important sounding engineering degrees, maybe it’s a case of waiting for the tides, or the planets to be in alignment, or something.

But I do have to wonder … Four months and no activity on their part to allow wheelchair access through the park once more, access they removed, access they’re denying us – If they’re going to say they’re still “looking into it”, then perhaps the State should start investigating why it costs them so much money to figure things out, especially things that I managed to figure out in, oh, 30 seconds?

After all – it’s my money too that they’re getting.

Perhaps indeed it is time to start demanding a refund via an ADA lawsuit.

Lisa Takeuchi Cullen runs a blog on Time Magazine’s website, “Work In Progress“, which sometimes can be almost close to approaching nearing the level of cynicism I occasionally use here.

Recently, she ran a blog entry, “Equal pay isn’t a partisan issue. Is it?“, explaining that the Ledbetter Fair Pay Act had been filibustered in Congress by the Republicans.

The Act was intended to be

A bill to amend title VII of the Civil Rights Act of 1964, the Age Discrimination in Employment Act of 1967, the Americans With Disabilities Act of 1990, and the Rehabilitation Act of 1973 to clarify that a discriminatory compensation decision or other practice that is unlawful under such Acts occurs each time compensation is paid pursuant to the discriminatory compensation decision or other practice, and for other purposes.

In other words, to change those laws so that the Statute of limitations regarding lawsuits brought because of unequal pay start with the last time a paycheck was issued.

This Act was in response to a recent SCOTUS 5-4 ruling in an unequal pay lawsuit that decided the statute of limitations “clock” begins at the date of hiring, and runs for 180 days from that date.

Lisa Takeuchi Cullen asks at the end of her blog entry:

Senate Democrats blame Republicans for blocking the vote to protect employers from litigious workers. But what about protecting workers from employers who seek to pay them differently based on gender, race or religion? Can somebody clarify this for me?

The excuse the Republicans have offered for blocking the bill was “protecting employers”. It makes me wonder – just how much do Republicans think unequal pay is prevalent in the workplace?

The Supreme Court has effectively ruled that the laws for equal pay are totally unworkable, and has practically stripped employees of protections against such discrimination. It’s virtually impossible for employees to detect pay differences within 180 days of their hiring date, as the Supreme Court has ruled must occur for them to seek redress.

So all an employer has to do is keep unequal pay a secret for 180 days, and then they can go right ahead and totally screw employees at will, with the practical blessing of the Supreme Court – and the implied blessing of Senate Republicans.

Likewise, they could hire someone for 180 days, give that person’s peers a pay rise later, and the employee with the unequal pay has no recourse.

The justification Republicans claimed for the filibuster is an admission that unequal pay exists in the workplace – they blocked it because they expect this endemic state of affairs to result in large numbers of lawsuits if the bill passed.

They admit to this expectation, quite freely.

“We think that this bill is primarily designed to create a massive amount of new litigation in our country, and I think that is the reason for the resistance to its passage on our side,” Senate Minority Leader Mitch McConnell (R-KY) is quoted in a Los Angeles Time report.¹

An expectation they could only arrive at with awareness of the scope of the issue.

It’s the only logical explanation behind their filibuster – If they’re expecting so many lawsuits should the Act become law, they must know that the situation is endemic.

In filibustering the Act, they send one clear message to already-struggling businesses and employees – They’re going to permit and perpetuate discrimination rather than allow it to be resolved the only way possible – through the courts.

The filibuster tells employers they can discriminate against employees, including members of so-called “protected classes”, for any reason when it comes to unequal pay, without any fear of being held accountable.

The Senate Republicans, through this filibuster, have effectively demolished another part of anti-discrimination legislation.

Now, employers can legally escape the consequences of paying people with disabilities far less than their able bodied peers.

So now not only can businesses continue their practices of hiring people with disabilities to fulfill phantasmal quotas to give the appearance of “equal opportunities”, they can do it on the cheap.

It’s only a few steps removed from slavery.

Does anyone really believe employers aren’t going to jump at the chance?

Lisa Takeuchi Cullen asks about protecting employees from unequal pay based on “gender, race, or religion”. Even as a Time reporter, however, she doesn’t seem to have thought that people with disabilities are also likely to suffer from unequal pay.

It’s understandable, I suppose, that people will think first about the effect on women’s rights, or religious rights, but the rights of people with disabilities are also affected.

Not to mention it’s possible she just forgot to include people with disabilities when she wrote her blog entry.

But we need to remind everyone that we, too, are a part of those affected, especially now – if the bill is resubmitted to the Senate in the future, it might get “amended” to make it more palateable.

If experience is anything to go by, people with disabilities are likely to be disadvantaged in the process.

The Senators who voted to filibuster the Act, are listed below (House Majority Leader Reid allegedly voted “No” in a procedural move to keep the bill alive for the future).

Call them.

Write to them.

Ask them just what unequal pay situations they’re aware of, that causes them to want to effectively block employees being able to sue to stop discriminating practices.

Ask them why they are supporting unequal pay and discrimination, and are willing to perpetuate discrimination in the workplace.

• Alexander (R-TN)
• Allard (R-CO)
• Barrasso (R-WY)
• Bennett (R-UT)
• Bond (R-MO)
• Brownback (R-KS)
• Bunning (R-KY)
• Burr (R-NC)
• Chambliss (R-GA)
• Coburn (R-OK)
• Cochran (R-MS)
• Corker (R-TN)
• Cornyn (R-TX)
• Craig (R-ID)
• Crapo (R-ID)
• DeMint (R-SC)
• Dole (R-NC)
• Domenici (R-NM)
• Ensign (R-NV)
• Enzi (R-WY)
• Graham (R-SC)
• Grassley (R-IA)
• Gregg (R-NH)
• Hatch (R-UT)
• Hutchison (R-TX)
• Inhofe (R-OK)
• Isakson (R-GA)
• Kyl (R-AZ)
• Lugar (R-IN)
• Martinez (R-FL)
• McConnell (R-KY)
• Murkowski (R-AK)
• Reid (D-NV)
• Roberts (R-KS)
• Sessions (R-AL)
• Shelby (R-AL)
• Stevens (R-AK)
• Thune (R-SD)
• Vitter (R-LA)
• Voinovich (R-OH)
• Warner (R-VA)
• Wicker (R-MS)

Then go read Lisa Takeuchi Cullen’s blog, it’s funny!

(With apologies to Lisa Takeuchi Cullen for calling her Lisa Takeuchi Cullen in this entry, since I don’t “know” her it’d be rude for me to just call her “Lisa”)

1. AHN – Senate Republicans Deny Democrats Consideration Of Fair Pay Act [back]