Redefining Disability Challenge – Question 41

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the forty-first question in the Challenge. As usual, I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later in the Challenge. Here is this week’s question:

Free post day! Write about anything on your mind today. Any topic that the series doesn’t cover, anything going on in your life related to disability, something you’re excited for, something you’re frustrated about.

I hate winter weather. I despise being cold. It causes physical pain when my feet get cold, and they are almost always cold from November to May each year. I dislike having to drive in snow with other drivers, most of whom never seem to remember to be cautious. I can’t move my arms if I have to wear bulky sweaters and jackets. Every movement requires more energy and takes more time.

My friends and family know I hate winter. I do my best not to complain. However, it is a safe bet I will put on a bright face in public yet privately curse the cold in my head for months on end. I spend far too much time and energy being miserable about something I cannot control – a behavior I routinely advise others to avoid.

Why do I stay in upstate New York where I am miserable due to weather for six months of the year? Wouldn’t it just make sense to move to a warmer climate?

I stay in New York for many reasons. My elderly parents live in New York, and I like being able to get to them within a couple of hours if needed. Most of my other family members live in New York, and they are part of the support network I rely on to live independently. But the main reason I continue to live in New York is because my disability requires me to use personal assistance to be independent, and New York has one of the best consumer directed personal assistance (CDPA) programs in the United States.

As I have mentioned in prior posts (you can find three of them here, here and here), I rely on the Personal Assistants I employ through CDPA to perform daily tasks most nondisabled people don’t think about. Each day, these dedicated women get me in and out of bed, help me on and off the toilet, assist me with showering and dressing, style my hair, prepare my food and clean my house.

If you required this level of assistance to meet your basic needs, and could not afford to pay for them out of pocket (private health insurance does not pay for long-term home care), you would want to live in a state with good services. I have decided to tolerate single-digit Fahrenheit temperatures and below-zero wind chills because I do not have $50,000 to spend on my personal care each year and I want to have control over how and when I receive my care.

In the United States, most people who require long-term home care rely on Medicaid to pay for care. Some states do not offer self-directed services to Medicaid recipients. Some states have waiting lists for home care, forcing people to remain in institutions. Some states limit the number of hours or care a person can receive. Most states limit the amount of income a person can earn and still remain eligible for CDPA through Medicaid.

New York has a comparatively generous Medicaid Buy-In Program for Working People with Disabilities. As a single person, I can earn almost $60,000/year and still remain eligible for CDPA. There are very few states which permit that level of income while retaining services.

I am not saying New York is the best state in the nation. There are many reasons to want to leave. But when it comes to how I live my life, there are many reasons I stay.

Even if it means another day of freezing cold. Spring is only three months away. I can make it.

Unless I win the Powerball tonight. Then all bets are off because the meteorologist just said it is 6° Fahrenheit this morning and I’m cold.

 

 

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Redefining Disability Challenge – Question 27

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the twenty seventh question in the Challenge. As usual, I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later in the Challenge. Here is this week’s question:

What is your opinion about forced treatment, and who should decide when a person is or is not capable of making sound decisions about treatment?

Personal autonomy is important to me. My body is my own, and I expect to be part of any discussions related to my care or my life. I was raised by parents who supported this idea and taught me how important it was for me to be an expert on “Denise.”

As a child, I was never excluded from discussions between my doctors and my parents. They included me in every medical visit, even when the doctors wanted to talk to my parents about “things I wouldn’t understand.” My questions were answered with patience at a level appropriate to my cognitive ability and maturity. If doctors or interns asked my parents about having me removed from the room, they would explain this was my appointment, my body, and I had a right to be there. As a result, I learned about my disability at a young age and was able to explain it to other children who often asked, “Why do you walk funny?”

I am skeptical of any medical professional who does not treat me as an equal member of my care team, an expert on my body, capable of self-direction. I have ended relationships with doctors who came highly recommended as “experts” because they did not listen to me or acknowledge my questions or concerns. It is important for me to feel heard and respected as the expert on my body.

For the most part, I have never been in a situation where I have had to endure forced treatment, unless you count all of those years my parents forced me to do physical therapy as a child. I hated physical therapy. PT, which in my mind stood for Pain and Torture, consisted of having my contracted joints and muscles stretched two or three times each week by women who seemed nice enough on the surface but never quite convinced me they didn’t secretly want to see how much agony I could endure before crying out. It was a contest of wills. How long could I lay on the mat doing deep breathing while they manipulated my arms and legs? If I made them break a sweat trying to stretch my hamstrings, I won. I almost always won.

Looking back on the PT I received as a child, I know my parents were doing what they felt was best for me – and it was good for me to be active. I maintained the ability to walk until I was twenty years old. I lived without needing daily homecare until I was thirty four years old. My muscles would have atrophied at a faster rate and my joint contractures would have progressed at a more rapid pace without exercise and stretching.

My experiences with forced treatment as a child are much different than adults who live with intellectual disabilities or mental illness. Questions of capacity, or the ability to make decisions and understand the consequences of your actions, are grey areas and cause feelings of unease in many. Many feel they are acting “in the best interest of a patient” when they advocate for forced treatment, and maybe they are.

I don’t have answers. I have questions.

Should adults with intellectual disabilities be seen as capable of consenting to sex and receive appropriate sexual education? Should adults with a diagnosis of mental illness be forced to take medication in order to receive public assistance or crisis housing? Should single parents who acquire a disability automatically lose custody of their children just because of their new physical or mental disability? Should people in the early stages of Alzheimer’s be engaged in discussions about advanced directives and end of life care?

When I worked as a speech-language pathologist, I was often involved in conversations regarding a person’s ability to safely eat and swallow. My goal as a medical professional was to give as much information as I could so my clients could make informed decisions. I never told anyone, “You can’t eat anything by mouth ever again.” I did my best to explain the risks related to their specific case knowing they had the right to refuse the recommendations I made to their doctors, who had the power to change medical orders related to diet and food and fluid consistency.

Sometimes my clients went along with my recommendations and the prescribed diet changes. Sometimes they chose to refuse. I was never angry when my recommendations were ignored by a client. After all, I routinely ignore recommendations made by medical professionals who are “only concerned about me.”

If I demand the right to self-direct my own care, it is important to me that I take a stand for others who demand the same right. In my daily work activities, which now include advocating for self-directed home care, I try to educate others about the importance of autonomy. Fellow blogger Hannah, who writes over at The Pen is Mightier than the Sword, wrote a great post about a bill of rights as an autonomous disabled person.  In it she writes, “If I say that a solution does not work for me, people need to listen to that and respect that.”

Respect. Isn’t that what everyone wants? Isn’t it what we all deserve?

Redefining Disability Challenge – Question 26

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the twenty sixth question in the Challenge. As usual, I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later in the Challenge. Here is this week’s question:

What barriers do you encounter in your daily life when it comes to disability?

I have tried to structure my daily life so I face very few barriers. However I live in a world designed for people who walk, people who have muscular strength, people who can climb stairs and navigate uneven surfaces, people who can reach above their head. The physical barriers are real, and they do present challenges. But, when I think of true barriers to equality what comes to mind are the financial sacrifices I must make due to my need for personal care.

Since I rely on Personal Assistants (PAs) to assist me with the tasks of daily living, I am beholden to the system which makes this assistance possible. As such, I must comply with rules which limit my financial independence and self-sufficiency. I have written about this before in Redefining Disability Challenge Question 6 which you can find hereYou should go read that post now if you haven’t already to get an idea of what I mean. I’ll wait. It’s important background information.

I am fortunate because I have been employed full time in four occupations since I finished my Master degree in 1996. I enjoy my current job and find it very rewarding. Yet, I know I could do more. I remain at my job, a position for which I am over-qualified, because it does not pay me at a level which will make me ineligible for Medicaid, the publicly funded program which pays for my personal assistants. 

Like most adults with disabilities who depend on Medicaid, I do not have an emergency fund. In order to qualify for Medicaid, I am not allowed to have more than $2000 in liquitable assets. This forces me, and others like me, to rely on credit cards or the kindness of others when emergencies occur.

Cars break down. Microwaves stop working. Wheelchairs and durable medical equipment need repairs.

Life happens. When it does, I am forced to pay for it using a credit card. This means I am paying for the emergency over an extended time and paying more than the true cost because of course I don’t have an emergency fund to pay off the card before the interest gets tacked on to the purchase. If I were allowed to have a job which compensates me for what I am worth without losing my personal care, I could develop an emergency fund and pay for these things with the fund rather than a credit card!

The assistive technology and equipment which make it possible for me and others like me to function are wonderful, but they are expensive. Modified vehicles cost two or three times more than standard vehicles, depending on the technology needed by the driver or user. Durable medical equipment purchases for things I require, such as a tub transfer bench and bedside commode, were not approved by Medicaid or my insurance. I guess because the ability to bathe and go to the bathroom were not deemed medically necessary. I pay for other necessities which I use daily such as baby wipes, the device which makes it possible for me to wipe myself after I go to the bathroom (my PAs refer to it as “toilet tongs”), disposable gloves for my PAs, and the reachers which help me independently activate the button to release my wheelchair from the van restraint system (quite possibly, the MOST important tool I own). While not expensive individually as purchases, these add up over time.

Whenever I travel, I must pay for at last two of everything so I can bring a PA with me. This doubles the cost of every trip, which is why I haven’t taken many since I began using PAs. Without the generosity of many friends, family members, multiple Rotary Clubs and strangers, I would not have fulfilled my dream of traveling to Australia in March. There was no way I could come up with the extra $3000 required for another person to travel with me, because I am not allowed to have a savings to make these opportunities possible and I cannot accept a job which pays me thousands of dollars more than I currently make.

I use these real world examples to show the reality of what it is like to live “in the system” as a woman with a mobility impairment, not because I am looking for financial assistance. I am NOT looking for a hand out. I work within the system to the best of my abilities. I live simply. I budget. I follow the rules. I pay my bills and I am not lacking for anything I require.

But I am not financially secure. And neither are millions of other people like me. We do not have true financial independence, because the antiquated rules do not allow us to fully prosper.

That barrier is what truly makes it impossible to achieve full equality.

Redefining Disability Challenge – Question 21

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the twenty first question in the Challenge. As usual, I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later in the Challenge.

Here is this week’s question:

FREE POST DAY! Write about anything on your mind today. Any topic that the series doesn’t cover, anything going on in your life related to disability, something you’re excited for, something you’re frustrated about.

 

I had a great post planned for today. I was going to write about the 25th Anniversary of the Americans with Disabilities Act. I’ve been spending a great deal of time thinking about that, as I am scheduled to speak about it at our local celebration on Friday.

But then Monday happened. And getting to the event on Friday may not be a possibility.

On Monday, the Electronics Control Unit, or controller (AKA – the brain of my power wheelchair) died. This is not my first power chair, so this is not the first time this has happened to me. My first power chair went through two controllers. My second power chair needed a new controller when it was not even three years old. And again, exactly one year later. And yet a third controller one year after that, before I was eligible to buy a replacement chair (because the insurance companies only pay for a new power wheelchair every five years).

I have had my current chair for exactly three years. Well, three years and one week if you really want to be specific. And now, just like the prior chairs, it is dead.

Not completely dead. Just in a coma, waiting for a transplant at my local wheelchair repair shop like a terminal patient watching the clock for the replacement organ to arrive.

You can install a new controller and revive the chair. Well, maybe not YOU. Bob, my amazing wheelchair repair tech, can install it. But, first the part has to be ordered. Then it has to be shipped. And then it has to be installed. And even though I can get from Albany, NY, USA to Hobart, Tasmania, Australia in thirty six hours, it may take up to a week for this little controller to get here from wherever it is at this very moment. And Bob is on vacation this week – a vacation he did not have my approval to take! The other guys in the shop are good, but they aren’t Bob.

The part has been ordered, but my wheelchair repair shop has no estimate as to when it will arrive. The second controller on my second power chair died on a Monday night while I was in Grand Rapids, Michigan, for the Ms. Wheelchair America pageant in 2011. The replacement controller was ordered on Wednesday morning and arrived on Friday morning. I was back in my chair at 2:30 PM Friday afternoon. So, things can happen quickly in the world of wheelchair repairs. I just don’t know if they will happen quickly this time.

In the meantime, the shop has given me a crappy, old Permobile as a loaner. I say old because it is battered, bruised and banged up. I say crappy because IT’S NOT MY CHAIR!

Allow me to illustrate what it is like to use a chair other than my own. Imagine you woke this morning with a new pair of arms and legs – say the ones belonging to your neighbor. Your neighbor is a different height and weight, so her arms and legs will not fit your torso appropriately. They will not react to the impulses you send down your nerves in the same manner as your own limbs. If you walk, your gait will be unsteady and your balance will be shaky. When you reach for objects, you will need to remember your new replacement arms are not the same length or strength as YOUR arms. You will use muscles you don’t normally use just to maintain an upright posture. You will be fatigued just from trying to do your typical morning routine. Nothing will feel right.

Nothing IS right. EVERYTHING is wrong.

Here’s a list of why I am currently miserable. Yes, this may include more personal details than you ever wanted to know about me. But to really understand how important someone’s assistive technology is to their quality of life, you need to sometimes see the ugly truth about the reality of disability.

  • I cannot transfer in or out of this chair independently, so I cannot get in and out of my van. This means I cannot leave my house to go to work, or any other location. Sure, I can wheel from my bedroom to the dining room. And if there were a fire or an emergency, I could get out the front door in this chair. But I cannot leave my house to go to work. And I only have five paid days of time off left since I took a two week trip to Australia three months ago.
  • I do not fit under my bathroom sink to brush my teeth. I have to use a spit cup. I hate using a spit cup. I feel like I’m in a hospital.
  • I cannot sit comfortably at my computer desk at home and I am in pain from trying to type for an extended length of time in an awkward position.
  • I cannot reach up to brush the hair back off my face because my arms are too weak to lift up without balancing them on the arm rests, but the arm rests on the replacement chair are not long enough for me to prop up my elbow so I can reach my brow. I also cannot brush the back of my hair because of the stupid armrests, but also because the back of the chair is WAY. TOO. HIGH.
  • Have I mentioned the pain and discomfort? My back has been in agony since around 10. My shoulders have been burning since 2. It is 6:15 PM Tuesday as I write this. I am stuck in this torture for another two hours. And tomorrow it begins again. I have some prescription medications left from an injury earlier this year, but I am not functional if I take them. I am already impaired enough being out of my chair. I am hesitant to add chemical alterations to the mix.
  • This chair does not have swing away foot pedals. It has flip up foot plates. Except, because it is old and banged up, the right foot plate does not flip up completely. So, when my Personal Assistant (PA) tries to help me transfer out of the wheelchair, the foot plate digs into the back of my right leg, essentially knocking it out from under me as I try to stand.
  • This chair is a front wheel drive chair, which means the drive wheels are located in the front of the chair, under my legs. My chair is a mid-wheel drive chair, which means the drive wheels are in the middle, directly under my seat. The two chairs perform very differently. I feel like I am fish-tailing constantly, and I have no idea where my “back end” is as I rotate. The turning radius is larger, which means I have almost ripped out my bathroom sink and doorway multiple times. And this chair has two ‘anti-tip’ front caster wheels in front of the drive wheel which supposedly help it drive over thresholds and obstacles, but in reality get in the way of anyone attempting to perform a stand-pivot transfer. This is how I get in and out of the chair. If my PAs manage to get through this experience without tripping over the wheels, it will be a miracle.
  • Transferring in and out of the shower is exhausting, because I don’t have my chair to lean on as I shift and move on my tub transfer bench. My PA has to assist me with every movement, which means it takes me twice as long to get into and out of position, and twice as much energy.
  • Because I cannot transfer in and out of the chair independently, I need assistance for EVERYTHING! Getting on and off the commode, cleaning up after using the commode, getting off the commode. I don’t have MY chair to use as a leg rest while sitting on the commode, because this chair does not have foot pedals, so I am unable to balance and wipe myself. Thank goodness I don’t have my period this week. The last time the controller broke on my chair – that time I was in Michigan? Guess what arrived the day AFTER the chair broke?! When was the last time you let someone else wipe you, those of you who don’t need assistance with it on a daily basis? I have had others help me with this task before, and I will need to have them help me again in the future I’m sure. But even if they do it well, nobody does it the way you do. Try for yourself tomorrow. Have someone else perform this task for you and let me know how many wipes you go through. P.S. Baby wipes are quite possibly the best invention. Ever. I use Huggies Simply Natural in case anyone wants to drop some off. And no, I did not get paid to endorse them.

Monday, as I was waiting for the diagnosis on my chair, my best friend sent me a text which read, “You are the luckiest girl on earth!”

My response to her? “Some days I am. Even if I don’t feel like it right now. Thanks for reminding me that I am!”

Yes, this sucks right now. There is no other way to say it. It’s terrible, and it isn’t going to get better for several days. I am exploring options with the wheelchair repair company (new batteries for my old chair may be a possibility) but until I get MY chair back things will just be bad. I will be short tempered. I will snap at those who care and try to help. I will apologize because I know they are acting out of love and concern. I will write gratitude lists daily – I’ve written three so far today!

Because I AM lucky. My chair broke as I was returning home from a long weekend away with family. I was able to get it to my local repair shop, instead of being stranded out of town, or out of the country, without a chair. I have a roof over my head, food to eat and a clean bed to sleep in. I have some loyal PAs, friends and family who have reached out with offers of assistance. I have an understanding employer who is letting me do some work from home as I am able. I live in a country where replacement wheelchair parts are available, even if they aren’t here instantaneously. I have virtual friends and readers who let me use this week’s challenge as an opportunity to vent, and be less optimistic and cheerful than usual.

I put on a good front. I appear confident and outgoing in my professional life. But the reality is, all of us who depend on complex technology for our independence and life are one accident, one breakdown, one illness away from total dependency and isolation. Maybe I needed the reminder so I would realize how easy life was last week when all I was worried about was hiring new PA staff.

Because, oh yeah – I’m still hiring.

And if anyone has a spare Invacare controller they have no use for, I’ll be at home for at least the rest of the week.

Redefining Disability Challenge – Question 20

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the twentieth question in the Challenge. As usual, I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later in the Challenge.

Here is this week’s question:

Do you have preferred language when it comes to disability?

I have been waiting for the “language question.” As a speech-language pathologist, I recognize the importance of language. As a person with a disability, I am particularly sensitive to language used to describe me and others like me who live with disability. As you read this post today, please remember I am writing from my point of view and not on behalf of all people with disabilities. Language is important to many, and there is more to using respectful language than just being “politically correct.”

The language used to refer to disability varies around the world. Like many Americans, I favor person first language, or language which places the person before the disability (a person with a disability, not a disabled person; a child who is diagnosed with diabetes, not the diabetic child). Not every disability group prefers this language, so it is always best to ask an individual what language is preferred, and try your best to honor their preference.

I support person first language, particularly in the media, because of the definition of language itself. Language is a shared, symbolic code used to express a culture’s ideas, values and beliefs (thank you Dr. Mark Ylvisaker for drilling that into my head during your 8:00 AM Introduction to Language Disorders course!). If you follow that definition of language, then the language used when talking about disabilities is important in framing and reflecting how we perceive disability. I support person first language because I want to be seen as a capable person first, not a disabled person. If we consistently put the disability before the person when describing someone, what do we value or believe about them?

Webster’s Dictionary defines disabled as “incapacitated; unable to work.” I am not a disabled woman. My woman-hood works just fine. I am not a disabled person. My person-hood is intact. I am not incapacitated. I have full time employment, and I also work 49 hours each week managing my personal care team. I live in a country with laws such as the Americans with Disabilities Act which grant me equality and access, and I am able, not disabled.

Now, there are times when I refer to myself as a “disabled person” and usually these times occur when I am referencing the social model of disability which I wrote about in my response to the second question in this challenge seriesMost of what I wrote in that post can be applied to this challenge question regarding language since a person’s view of disability often influences the language he or she uses when talking about disability. If you missed that post, I encourage you to go read it now for a more thorough discussion of the social model of disability. I’ve taken some of it for use here.

I live in a culture which for decades (centuries?) has viewed disability through a medical model. The medical model of disability views disability as a health condition (usually a deficit or abnormality) which is dealt with by medical professionals. The “problem” of disability is one to be “fixed” or “cured.” A person is often described in terms of what they cannot do.

Did you notice all of the negative language in my description of the medical model? Often, viewing disability through a medical model results in pity for the person “afflicted with” or “suffering from” an impairment. If a person is not “normal” as defined by doctors or professionals, it is assumed their quality of life must be less than those without disability. People with disabilities are encouraged to “overcome” and must adjust to “mainstream” society because the disability is the person’s problem. Disability is negative, and a person’s experience is often described using the words or phrases I have put in parentheses.

The social model of disability contrasts to this view. The social model does not deny an impairment and the impact it has on a person. But disability is viewed as the result of interactions between a person living with impairments and the barriers they encounter in the social environment. In this model, it is society which needs to change to accommodate people living with impairment instead of the individual needing to accommodate to a society which does not grant them equal access. I don’t need to be able to climb steps – the business owner who wants my money must make their business accessible to me.

If people with disabilities are viewed with pity or as objects of charity (medical model) instead of individuals with rights who are able to make decisions for our own lives, able to give informed consent and be active members of society (social model), we will never be treated as equals. Language can influence how people with disabilities are viewed by society.

I am particularly attuned to the language others use to describe me. If I am repeatedly described in newspaper articles as “wheelchair bound” or “disabled” (even when I ask reporters to use person first language), how do you the reader perceive me? How should I feel if I overhear someone describe me as “an invalid?” Yes, there are people who still use that word. Say it both ways. Invalids are invalid.

My friends and family offered different words to describe me. Positive words, like “independent,” “intelligent,” “outgoing,” “articulate,” and “caring.” Capable words, like “talented,” “creative,” and “musical.” I know which language I prefer.

When I conduct presentations and trainings on disability etiquette, I often hear questions from participants who are fearful of offending someone or using insulting language. Language, like culture, is always changing and evolving. Many words which were widely used by previous generations are considered offensive and thankfully are not used today. I recognize this may not make it easy for someone who is not as involved in the disability movement.

If you are looking for some basic disability etiquette, United Spinal Association has a guide on their website. As a general rule, I think it is best to try to avoid language which has historically been, or is currently, used to marginalize or oppress people with disabilities. Try not to make assumptions. If you are going to ask a person with a disability about language (or anything else), always speak directly to the person and not to the person’s friend, assistant or interpreter.

And whatever you do, never, EVER say the “R word.”