Disability Thinking

Wednesday, March 26, 2014

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.

Tuesday, March 25, 2014

"Shared Abilities" Blog Post

A Significant Protest By Disabled People: 25th Anniversary

Shared Abilities - March 25, 2014

My most recent blog post at Shared Abilities is up and ready to read. It’s about the 25th Anniversary of the Gallaudet University protests that resulted in the appointment of the first Deaf President of the nation’s premier University for the Deaf, and how it changed how I viewed my own disability.

"We've been dicking around too long!"

Look, I’m not going to reblog every new post about the ADAPT protest in Albany, NY. If you are reading this you can follow events as easily as I can on the Community First Choice In New York blog. But I just had to post this YouTube video of the protesters, who are escalating their occupation of the New York State Nurses Association.

The man who says, “We want them to move the Assembly now. We’ve been dicking around too long!” is Bruce Darling, Executive Director of the Center for Disability Rights in Rochester, and someone I knew when I was an ILC director in New York State. This brings back memories, though none quite like this!

By the way, Bruce was probably speaking off the cuff, but “We’ve been dicking around too long!” could be the new official slogan of the disability rights movement.

Blogging The Protest

Community First Choice In New York

The protest in Albany continues, and now they have a blog, linked above. Given how easy it is to set up a free blog, I’m amazed more protests don’t do this. Twitter seems like the best way to update people as events unfold, but you can’t have detailed policy discussions or manifestos in 160 characters or less. Blog entries can be as long as you want, the print can come from anywhere, and adding photos is dead easy.

This is just really cool.

Monday, March 24, 2014

Photo Of The Day

African-American man in full body armor sitting in a wheelchair

From the Howlingblaster Tumblr blog, via Thalensis.

Exclusion

Practicing pride in the face of exclusion

Stella Young, ABC Radio “Ramp Up” - March 24, 2014

This is another brilliant and emotionally resonant article by Stella Young, a radio journalist at the Australian Broadcasting Corporation. She describes the dual pain of exclusion caused by inaccessible places. We are robbed of the experience that is inaccessible, and at the same time, we are placed in a no-win situation where one way or another, a social wedge will be driven once again between ourselves and our non-disabled friends. She also underscores how failing to consider accessibility is much more than just an oversight, more than a minor detail. In the most practical sense, that little bit of thoughtlessness produce a literal exclusion. That it is unintended makes no difference. That is a key to understanding ableism.

Albany ADAPT Protest Update

My local Center for Independent Living, the North Country Center for Independence, posted an update on their Facebook page, from the Albany, NY ADAPT action at the New York State Nurses Association I wrote about yesterday. I’ll just quote the whole message sent out from the protest:

"The ADAPT activists who have occupied the offices of the New York State Nurses Association appreciate the outpouring of support from the disability community and others across the nation. It has been over 100 hours since members of NYS ADAPT started the occupation of the NYSNA offices because the union opposes amending the Nurse Practice Act to allow attendants to do health related tasks. Throughout the occupation, we have negotiated with the nurses union in good faith to get their support for nurse delegation so people who need assistance with health-related tasks - including medication administration, ventilator care, assistance with catheters, suppositories and feeding tubes - can get that assistance in the community from attendants."

"By allowing advanced home health aides to do health related tasks, New York State will be able to implement the Community First Choice (CFC) Option. This Medicaid State Plan Option would assure that any individual eligible for institutional placement is able to access services and supports to live in the community. Under CFC, NYS would receive additional federal funding and would significantly expand the services and supports for people with disabilities living independently. Additionally, after expanding the availability of services, it is estimated that CFC at full implementation would generate an extra $340 million a year, every year."

"On Wednesday, when we first arrived at NYSNA, there was significant disagreement about the provision of assistance with health related tasks, and we were concerned that NYSNA’s advocacy was focused on preventing people with disabilities from getting assistance with key health related tasks to live independently. We explained that full implementation of the Community First Choice Option means that no person with a disability should be forced into an institution because they cannot get assistance with health related tasks."

"Through our negotiations, we secured a statement from NYSNA supporting the rights of all New Yorkers to be independent in their own homes, and the rights to any and all care needed to maintain that independence. In that same statement, NYSNA said that “To be clear, NYSNA fully supports the implementation of the Community First Choice program.” NYSNA also proposed alternative legislative language amending NYS education law to allow advanced home health aides to do health related tasks. We are now being told that NYSNA’s language creates a contradiction between education law that would authorize nurse delegation and the Nurse Practice Act in health law that precludes this."

"We are not union lobbyists or lawyers; nor are we governmental officials or legislators. We are people with disabilities who want to secure our civil right to live in freedom in the community. We are also activists, and we will hold the union, legislature and our governmental officials accountable."

"We have fought for 24 years to secure the right to live in the community rather than be forced into institutions. We will not wait any longer, so NYS ADAPT is continuing our occupation of the NYSNA offices."

DEMANDS

"Because of the legal problems that appear to be created by NYSNA's proposed language, NYS ADAPT demands that NYSNA immediately provide a compelling legal analysis demonstrating that their language does not - in fact - create a contradiction between health and education law. If NYSNA is unable to provide such a compelling legal argument, it must agree to address the contradiction by supporting the addition of a “notwithstanding clause” to their language or support an amendment to the Nurse Practice Act."

"NYS ADAPT further demands that the New York State Assembly Democrats ensure the civil rights of people with disabilities by supporting budget language that authorizes advanced home health aides to do health related tasks, and if necessary, amends the Nurse Practice Act in order to fully implement the Community First Choice Option, end the Medicaid institutional bias, and FREE OUR PEOPLE!"

Some of the folks from the North Country Center for Independence are planning to join the protest for awhile tomorrow. I’m hoping they’ll send some photos and Tweets.

The New 7% Hiring Goal

Are You Disabled? Your Boss Needs to Know

Lauren Weber, The Wall Street Journal - March 18, 2014

There is hardly a word in the national press about the new U.S. Labor Department rules going into effect today, requiring companies with federal contracts to aim for 7% of their employees having disabilities, and 8% being veterans. I have seen some stories in random local outlets, but the The Wall Street Journal seems to be the only major news organization taking any time at all to cover this. At first that concerned me, because The Wall Street Journal is fairly conservative and has a pro-business outlook. However, I think that actually helps in this case because while the tone of the article isn’t what I’d call hostile, it does raise some sensible questions. For instance:

- Employers will need to ask all of their employees whether they have a disability, so they can be counted toward the 7% goal. Will that conflict with the Americans with Disabilities Act, which prohibits employers from digging for details on employees disabilities, and protects employees’ right to not disclose disabilities? It seems like it will be fine for employees to ask, in a general way, if employees have a disability, and the employees won’t be obligated to answer. And “answering” seems to amount to nothing more than Yes or No, no details required. Still, it may take quite awhile for everyone to get comfortable with the question itself, and the idea of counting the number of employees with disabilities at all.

- Some employees who actually do have qualifying disabilities might not think of themselves as "disabled", and won't be counted. This is one of those instances when the lack of consensus about what "disability" is, and what terms are preferred, actually could get in the way of a valuable policy.

- 7% sounds like a high goal, but that's only 3-4 people in workplace of 50 employees. The WSJ article speculates that many companies may already be in compliance, and I tend to agree. That's fine, but since the new goal is supposed to increase employment of people with disabilities, maybe the goal is too modest.

Of course even on paper, this is just a goal, not a requirement or quota. From one point of view, this suggests that the new rules are purely symbolic, possibly a futile gesture.

On the other hand, I think this is one of those rare cases when "awareness" is more than just a platitude. If nothing else, the new rules will make both employers and employees a bit more aware of various aspects of disability and employment. Hopefully it will also produce enough data to figure out whether 7% is reasonable employment goal, or if it's too high or too low. Accurate statistics across all qualifying businesses might also help distinguish between those that really are open to workers with disabilities, and those that might try to parlay a few "heartwarming" hires into some kind of Good Samaratin image.

The rules may also give disabled people looking for work a different feeling about their disabilities. At whatever point during the application process they feel comfortable, they can mention their disability as a potential positive, not something to explain away or minimize.

Sunday, March 23, 2014

A Cold War Heats Up

Disability rights activists' encampment goes on

Jordan Carleo-Evangelist, Albany Times-Union - March 23, 2014

This Times-Union article does a very good job of explaining the fairly technical, obscure, but extremely important reason why 14 disability activists are camped out this weekend at the offices of the New York State Nurses Association:

"The group took over the union's lobby Wednesday to protest NYSNA's opposition to an amendment to the Nurse Practice Act that would allow a new category of workers, advanced home health aides, to perform some jobs currently restricted to nurses.

Expanding responsibility for those jobs — like administering medicine and assisting clients with ventilators — would make it easier for those in need of those services to continue to live in their homes rather than being prematurely forced into skilled nursing facilities, the occupiers argue.”

There’s also this ...

The nurses are protecting their own profession. If less-trained, lower-paid aides start being allowed to do medical-ish tasks, it threatens the job market for nurses. It’s the same with doctors and nurses. Nurses often argue, with good reason, that a lot of things doctors do for a higher price can be done just as well by Nurse Practitioners, for comparatively less. But doctors tend to resist that, in part because they are protecting their own market. Some nurses may actually believe that only they can help disabled people take pills and operate ventilators safely, but I suspect what they really care about is the prospect of a “race to the bottom”, with all kinds of medical institutions relying more on lower-skilled people they can pay lower wages. That is definitely not an irrational concern.

As for disabled people who need daily assistance, it’s not that they hate nurses, or want them to have fewer jobs and lower pay. Most really smart home care users understand that all sorts of home care providers should probably be better paid overall. The problem is that the more of our daily care has to be done by top-level professionals, the less likely we are to get that care in a way that enables us to live freely and independently.

Then there is this.

I use a ventilator at night. No rules or regulations prevent me from living alone and operating the ventilator for myself, even though I’m not a nurse. I’m just me, and years ago a Respiratory Therapist showed me how to run the machine I rent from his company. He visits me once a quarter to make sure everything is working okay, but other than that, I’m on my own.

The key difference is that I am physically able to operate the machine myself. At issue here are people who are just as smart as me, but can not, literally, push the buttons, turn the knobs, and attach and detach the breathing tubes for themselves. Their physical disabilities prevent them from operating the machine themselves. They need someone to be their arms and hands … under their direction. The same goes for medications. I can take my own meds. If I couldn’t physically open the bottles, pour a glass of water, and pop the pills in my mouth, I’d need someone to do these things for me. But, I would be responsible for which pills to take when, not the person fetching my water.

The nurses association is saying that in these cases, the people helping us have to be nurses, who are at the higher end of the training and pay scale, not “lower level” home care aides. Part of the rationale for this, I suspect, is the idea that it takes more than simple, direct instruction to handle a ventilator or administer medications. They would perhaps say that it takes general medical knowledge and professional judgment. Nurses are not just servants, doing our bidding. They are managers, who run our care according to the rules and procedures of their profession, and improvising as needed with their professional level of judgement. That's pretty great if you have the flu or pneumonia, or are recovering from surgery, but for everyday routine personal care, turning a machine on and off, or handing you a pill, a nurse is more than you really need.

That is the real difference between the disabled protesters and the nurse’s association. Disabled people just want help to do things they would be doing for themselves, if not for their impairments. Doctors and nurses are geared to delivering and supervising total care for profoundly sick patients. These two things look the same, and include many of the same tasks, but the relationships are very different.

I hope that this protest ends in success. More than that, I hope everyone involved finds a way to defuse what could amount to a zero-sum Cold War between disabled users of home care, and professional nurses. Both have important interests to guard. It would be nice if they found a way to do it without penalizing or scapegoating each other.

Addendum:

This is a good opportunity, also, to once again praise ADAPT's political skills. This all started earlier in the week with angry Tweets and behind the scenes advocacy with New York State Assemblymember Deborah Glick, a liberal Democrat, who to many peoples' surprise, blocked what looked like easy passage of the Nurse Practices Act changes this is all about. Later in the week, ADAPT pivoted its efforts when, I presume, they found that Glick was doing this to support the NYS Nurses Association. In political terns, it looks like Assemblymember Glick chose a very established, known-quantity liberal constituency ... a nurses union ... over a chronically misunderstood, overlooked, and mishandled component of the progressive coalition ... the disability community. I think ADAPT was right to shift it's focus to the nurses. However, I hope Assemblymember Glick and other progressive lawmakers get the message too, that they have a lot to learn about the disability community, and about the implications of our vital interests.

Addendum #2:

Sponge-bathing in the restroom: Sit-in protest enters fourth day

Steve Flamisch, WNYT News Channel 13 - March 23, 2014

Another good article on the ADAPT protest. The key quote:

“ … the union has no desire to force anyone into a nursing home or other institution.”

That is a pretty standard spokesperson statement. It is also probably true. Yet, it also suggests a very common type of misunderstanding in the realm of disability rights and disability policy. Policies damaging to the the lives of people with disabilities are almost never intentionally harmful. Few except for extreme medical traditionalists actually want more disabled people in nursing homes. The problem is that policies intended to do one good thing like ensure higher quality care … often end up also knocking over a different set of dominoes entirely … such as making home care impossible to pay for, thereby forcing people into nursing homes. In this case, as in so many others, it takes disabled people themselves to notice the unintended consequences of policies designed by people who, frankly, only have a rudimentary understanding of our lives.