Yes, I'm A Killjoy

This Unique Invention Will Allow Disabled Children to Walk For the First Time

Elizabeth Plank, PolicyMic - March 26, 2014

It's getting to the point where I think I know a little of what it must be like to be a feminist ... compelled to ask uncomfortable, confrontational questions just when everyone is having a good time.

I had a strongly emotional reaction to this story, which has been making the rounds of first British, and now American newspapers and websites. But not the kind of emotional reaction one might think. I mean, who can resist that lovely photo, right?

Once I finally read the article, my first reaction was to be very upset. Not just intellectual disagreement upset, but personally upset. It seemed to me that either the article's writer, or the Upsee company, or both, were saying that the great thing about this Upsee invention is the joy it gives the parents to see their disabled kids "walk" and look more normal. This, despite the fact that compared to an operable wheelchair, crutches, or a walker, this device makes the child more dependent for mobility on their parents, not less.

Also, the article itself, when I read it, led with inflammatory language like "bound to a wheelchair," some of which I think have since been removed, though the tone of story is basically the same. Parents are "devastated" by their children being disabled, possibly having to "spend their life in a wheelchair." Then along comes this clever invention that allows their kids to "play like other children." Whether intentional or not, there's a lot of emphasis on how great the parents feel, a little less on the practical use of the Upsee, and nothing at all about how the kids feel about it ... or will feel about it when the novelty wears off and they realize they are still, literally, tied to Mom and Dad.

On further investigation, in particular having a look around the company's website, I do see that the Upsee has two other, more substantial uses. One, it is apparently a good tool for physical therapy, and may lead to permanent physical improvements that can result in greater long-term independent mobility. As a person who might well have "spent my life in a wheelchair," if not for aggressive surgery and physical therapy in childhood, I can't really argue with such a goal or results.

The second benefit I see, though, is barely mentioned ... and that is that the Upsee looks like a very flexible, multi-use mobility device / carrier for very young disabled children. For really little kids it's probably more functional than a wheelchair. It also reminds me of the jury-rigged contraption my parents and a local bike shop "invented" for me when I was very young and had two legs in a cast. I'm all for devices that make it easier for parents to care for very young disabled children, and this Upsee looks like a great example of that.

But back to what upset me initially, and still does. It is the implication that this thing is the answer to a very particular kind of parents' prayer ... "Please let my child be more like other kids." This is a wish I cannot bring myself to oppose, but which really does wound me at the very core of my being. Whenever someone or something seems to confuse real, functional improvement with symbolism and masking of difference, it upsets me.

What worries me, too, is the children who will never be able to walk independently, with or without an Upsee. Will they go through an even longer phase now when they crave the appearance of normalcy over functional mobility? As it is, children and youth with disabilities waste years trying in vain to walk and talk and act "normally", often while letting more practical mobility skills and tools gather dust.

The Upsee looks promising, but there are so many basic questions to be asked, and everyone seems to be too busy cooing over the cute kids and their parents to think of asking.

Like I said, I'm a killjoy.

Victory In New York State!

Common sense won over the New York State Nurses Association!

Protesters end week-long occupation of NY nurses union office

Jon Campbell, Politics On The Hudson - March 26, 2014

“ADAPT has raised important and valid concerns about access to care and the ability of all New Yorkers to live independently in their own homes, and we feel that our proposal fully addresses these concerns,” the union wrote in a statement before the end of the sit-in."

"Darling said the group will now return its focus to the state Assembly in an attempt to get them to back the change before the state budget is passed. Cuomo and state lawmakers face a Monday deadline to pass a spending plan for the 2014-15 fiscal year, which begins the next day.”

Tweets:

ADAPTerBruce: Nurses association supports nurse delegation! ADAPT heads to the NYS Assembly!  @NationalADAPT

NationalADAPT: VICTORY: we who believe in FREEDOM will not rest till we have a CHOICE; COMMUNITY CHOICE! #FreeOurPeople

Now for the New York State Assembly ...

A Ventilator In A Fraternity House

A personal perspective on home care, flexibility, and common sense

"CFC requires states to provide assistance with Activities of Daily Living (ADL's), Instrumental Activities of Daily Living (IADL's) and health related tasks (like medication administration, tube feeding, and vent care) to assure that people have the services and supports they need to live in the community."

"Although New York State has a Nurse Practice Act (NPA) exemption for its consumer-directed program, it needs to amend the NPA to allow attendants under a more traditional agency model to provide assistance with health related tasks with training and supervision from a nurse." -- Community First Choice In New York.

I first experienced the weirdness of this kind of well-meaning but blinkered medical rule when I started using a ventilator at night in the late 1980s, at the same time I started college, exactly the same time.

When I first got my tracheostomy and ventilator in August, 1985, I was in the hospital of course, since trachs require surgery. For as long as I was there, at that hospital, at that time, I had to be in the Intensive Care Unit. Not because I needed that level of care … within days of starting to use the ventilator I was back to almost normal health … but because non-ICU nurses weren’t “qualified” to even touch a ventilator. So, there was the odd spectacle of me attending my first week of college classes by leaving ICU in the morning, going to classes, and coming back to the ICU at night.

That lasted a week, and might have lasted a lot longer, but luckily I was able to move instead into the college infirmary. The college's medical director ran the facility, and had the authority to look at my situations and needs, and agree that I could handle my own ventilator, with help from the infirmary staff, if needed. 

This was still not quite “independent living”, but it was pretty close. I stayed there for a full semester, still going to classes. Actually, it was a great way for me to learn all about the ventilator and tracheostomy care, in a partially medicalized setting where there was competent backup. Mind you, it wasn’t “qualified” like the ICU staff, but they were clever enough to assist me in operating the ventilator, should I occasionally need assistance.

Next semester, I moved into a regular dorm room. There were other students throughout the building, but essentially I was living alone, with my ventilator which I used every night. I didn't have any daily assistance of any kind, nursing or otherwise. I had support of the ventilator company, which made Respiratory Therapist visits every month or so, and supplied me with replacement components, taught me how to clean what needed cleaning, etc. It all worked fine.

In my Sophomore year, I moved into the fraternity house I had joined, and as far as I know, nobody had a coronary or gave a stern lecture about how irregular and unhealthy it all was. This was only a year after the majority of hospital staff had been deemed unqualified to so much as turn the ventilator on. Yet, I lived in that fraternity house until I graduated. Granted, the house had a reputation for being the opposite of the Delta House of “Animal House”, but still. The contradiction was not lost on me.

The key was that I had the physical ability to operate the machine. If I had needed someone else to do so at my direction, I don’t know what would have happened. Given the setting, it would have been an obvious thought to hire a fellow student to help, but would that have been allowed? And if not, why not? If I had the mental ability to take care of my own ventilator, why wouldn’t I have the mental ability direct someone else to do it for me?

As it was, it all might have collapsed anyway if not for key decision-makers being flexible and willing to think "outside the box." Should they have stood fast? Did bending, then changing the rules rob nurses of their proper purview? Did allowing a rank amateur (me) to take care of myself ruin my health? Would I be healthier now if I had a nurse visiting me every day, twice a day, to hand me a breathing tube and push the on button on my ventilator? Such nurses would be paid, of course, but would it be a good use of their time and training?

It took flexibility and a willingness to go with common sense, not the jealous guarding of professional turf or terror of liability, that enabled me to live a fully integrated life ... the kind of life ADAPT is fighting for now.