Disability Crowd Fund “Book for a Buck”

For the last several days, I have been hosting a crowd fund via twitter and Facebook. To put it bluntly, we’re broke and in trouble. My job cut my hours down to around 20 for the entire MONTH. My son works full time at minimum wage to help with bills, but with my hours being cut so far down, we’re drowning. We have one car, and we’re still making payments on it. We had already fallen a little behind on the payments and the company gave us until this month to get caught up. If we don’t, they will repossess it. It is our only transportation for my son’s job, as there is no public transportation to the nearby suburb where he works. It is also heavily used to get us both to doctor appointments for our various conditions. We need my car.

We are also behind on several other bills (phone, electric, water) and groceries. With our current schedules, we also will not have enough money for January rent on the first. The State of Texas has decided that since I used to get unemployment earlier this year (but haven’t in months), I still should be fine. They have denied any food stamps, Medicaid/CHIP (for our disabilities), or temporary assistance to needy families.

Least importantly, my son and I will not be exchanging gifts. I know gifts aren’t important, but it stings knowing I can’t give him anything, even after all he has sacrificed this year to work full time and help with household expenses. He has given up starting college yet, participating in several hobbies very important to him, and free time to see his friends. All of his friends went away to college this year, so often, when they have been back home to visit and wanted to see him, he had to decline because he was working. It hurts that I cannot get him anything to show him how much I appreciate his sacrifices.

I had asked for help from friends and the general public before, but the response was sporadic. Also, I felt guilty for asking for help again. My internalized ableism was causing me to really beat myself up. So I hit on a plan. I am working on a collection of short stories and poems to be published in February. As of right now, I am planning on self-publishing on Amazon. So, I hit on the idea to raise money by offering a “book for a buck.” Each person who donated at least $1 to my PayPal link would receive a PDF copy of my collection no later than 02/01/17. When a PayPal notification is sent, it includes an email address for the sender. When I get notifications, I immediately send a “thank you” note and ask if that is the email address to which their book should be sent. Then, whichever email address they state goes into a database I am compiling of pre-orders. That way I don’t miss anyone.

I’ve had a few pre-orders from friends, and many retweets of my offer on twitter (thank you, everyone). But actual donations/pre-orders have been limited to close friends (many of whom are experiencing hardships of their own). Then it hit me:  The general public doesn’t know if I can even write. They are probably scared they’ll get a hot mess sent to them. To that end, please scroll down to my next post. Here, you can read an excerpt from one of the stories that will be included, The Wager. You can also read a rough draft of one of the poems that will be included, The List in another post.  If you like them and want to read more, please donate to my #disabilitycrowdfund #bookforabuck campaign. All it takes is $1!

You can donate/pre-order here.

When PayPal notifies me I have received a donation, it usually includes an email address. I will email that address and confirm that is where you want your book sent. Whatever email address you reply as your preferred method will be added to my database of pre-order email addresses. If for some reason there is no email, I will post a comment on this post and/or twitter to track you down to contact me with that info. No later than 02/01/17, I will send an advance PDF copy of my book before I submit it to Amazon. Thank you all in advance for your support!

Advertisements

On Days When I Am Ready to Die

Today is one of those days – the days where the darkness is covering the horizon, the voices in my head telling me I am not good enough are drowning out everything else, my many failures in life are on endless loop in my brain, the soul-sucking loneliness is trying to crush me, the pain prevents me from getting out of bed – all I can think is, “wouldn’t it be so freeing just to die?”

If I were dead, I wouldn’t have to think about the fact that our lease is up next month and I can’t find a house that will take me, my son, and our four dogs, that we can actually afford. I wouldn’t have to think about the fact that I have no money saved for a deposit on a house – being unemployed for almost 4 months wiped out any savings I had. Years of living in poverty prior to becoming a teacher means my credit score is shot (mostly because of the last 18 months of medical bills trying to get diagnosed), so I cannot get a home loan, either.

If I were dead, I wouldn’t have to think about the fact that I am in pain all. the. time. There is no such thing as a comfortable position. There are no drugs in existence that can make me completely pain free. And doctors are even less likely to assist me with my pain because of the current hysteria over prescription pain medications. I wouldn’t have to think about the fact that it is just going to get worse as this incurable disease runs its course.

Most of all, I wouldn’t have to think about the fact that I have completely failed my son and my dogs – the ones who are completely dependent on me for everything. I wouldn’t have to think about the fact that I can’t teach any more because of the pain, making those college degrees and $160K of student loan debt into nothing more than a waste of time and money. I wouldn’t have to think about the fact that I am always going to be struggling like this. I wouldn’t have to think about the fact that there’s no food in the house. I wouldn’t have to think about the fact that I have more bills than I have coming in every month. I wouldn’t have to keep thinking – “living is a luxury.”

But because I am an introvert who spends way to much time in her head, I DO think. I think about a lot of things. And mainly, here lately, I have been thinking about all the reasons why I simply CANNOT die right now.

Why I cannot die today:

  • I am worth even less to my son dead than I am alive. If I had found some way to die while I was still teaching, he could have gotten a nice life insurance payment. But now, I don’t have that.
  • My son would only have more bills if I died. Even a simple cremation costs around $500-$1,000. Then there’s the cost of living. He just turned 18, so he couldn’t even count on the state to help him keep a roof over his head and food in his belly. He has never met (and doesn’t want to meet) his biological father, so that isn’t an option, either.
  • My rescue dogs would be in need of rescuing again. All four of them are damaged in some way. They don’t take well to strangers, so they would not be adopted easily. More than likely, they would either be put down, or left to die on the streets, where I found most of them. I can’t send them back there.
  • I was 23 years old when I had to sit and watch my mother die of lung cancer. I remember struggling as a young mother (my son was 2 years old), trying to be strong for her. I remember helping her plan her funeral, get her legal affairs in order. I remember being devastated when she died, yet happy that she would not be in pain anymore. But most of all, I remember the aching realization that I could never talk to her or ask her advice again. Sixteen years later, I still miss her with every fiber of my being. I cannot make my son begin his adult life by losing his mother. I cannot willingly leave him to struggle on his own the way I did.
  • Although both my parents are dead, I have a fairly large collection of “family” made up of friends who – for some reason I still haven’t figured out – love me. I don’t want to hurt them by leaving. I don’t want to leave them feeling confused and angry that I didn’t reach out to them for help. (But I also cannot reach out to them for help, because although I consider them family, there’s this little voice in my head that keeps telling me they won’t love me anymore if I bother them too much.)

This list has been on endless loop in my head for years. Sometimes, I have to repeat it to myself several times in the same day. Sometimes, I don’t have to remind myself for weeks. Here lately, I’ve said them to myself hourly, eyes closed, lips moving slightly as I go through my reasons, my own personal Rosary. I know that a day will eventually come when I stop reminding myself why I cannot die. I just know that today is not that day.

george in bed
If I died today, George would be back on the street, instead of trying to steal my spot in bed. 
mom and jodi grave
If I died today, I couldn’t tell my son stories about these two wonderful, courageous women. He would lose out on the family history about his aunt and his grandmother. Both lost their lives to two different types of cancer.
jamie shoes
If I died today, I couldn’t continue to watch this wonderful boy grow into a more amazing young man. He may be 18 now, but in my mind, this is what I see when I look at him.

On Why I Dyed My Hair Purple

Over the weekend, I finally did something I had been contemplating for years. I used a permanent dye on my hair to make it purple.  I had used a temporary dye over the summer a few years ago, and liked the way it looked, but didn’t go for permanent because I was about to start a teaching career. Schools tend to frown on teachers with hair colors that do not usually naturally occur in the human population.

However, since becoming disabled, I had started thinking more and more about going back to purple. At first, I resisted because I was job hunting after having to leave my teaching career due to my disability. Feeling as though I was maneuvered out of teaching after my diagnosis, I have been very up front on those “optional” EEOC disclosure statements letting potential employers know I have a disability. As more and more of the 150+ job applications I have sent out have been either ignored or rejected – despite my Master’s Degree, tons of experience in a variety of fields – having an “interview ready” appearance became less and less important.

More and more, I started noticing the way people stared at me when I was in public. For one thing, more often than not, I have a pronounced limp due to the damage that Psoriatic Arthritis has wrought to my spine and hips. PsA has also caused other damage that affects my ability to walk without pain (plantar fasciitis), my ability to grasp things without dropping them, often in public (carpal tunnel, peripheral neuropathy, tennis elbow, trigger finger), and has caused me to be extremely fatigued almost all the time. So, when the pain is too great, I have to use one of the motorized carts at the store. Because I am also plus-sized, that gets the most stares. I even hear muttered comments about “fat, lazy people,” which grow even louder when I also use my SNAP card to buy groceries for me and my son at said store.

Friday, after receiving a huge batch of emails stating I “wasn’t right for the position” and having encountered ableism and disdain at the workforce solutions office, I had had enough. I called my stylist and friend and told her I was done. I was ready to go purple. See, people have been staring at me for all the wrong reasons. Because of how I walk, because of how I dress (comfort is key due to constant pain), because of my size, because I keep my hair super short due to migraines (which is culturally not as accepted where I live), for a variety of reasons that have nothing to do with who I am, and all about other peoples’ judgment. I had had enough. I decided I wanted to take control. By golly, if people were going to stare at me, I was going to give them a REAL REASON to stare, one that I control and has everything to do with how I see myself, and not what judgments and bias they have ascribed to me. I wanted people to stare at me because I look fine as f*ck with purple hair, not because they pitied me or had scorn for me.

Through something as simple as hair dye, I have wrested control of how I am seen in the world from others and placed it squarely back where it belongs – in my own control.

2016-03-07 18.10.32

I had to boost the color detection in the photo to show how purple my hair is. I will take photos in better light once I am allowed to wash it again. LOL. One good thing about having lots of gray hair, my hair is multiple shades and brightnesses of purple, making it look almost like purple fire on top of my head. Yes, please stare. I know it’s all about the hair!

Apples & Oranges

So, a thread on twitter regarding #orangegate raised some points. I commented, and was asked for a clarification. I posted one, but it was not accessible for all. My apologies for not responding in a format accessible to all. I am still fighting my own, internalized ableist tendencies in the form of considering how different people will be able to interact with my content. So here is a more accessible version. (And, as I state multiple times, I am not trying to speak FOR all people whom this issue affects. I am just trying to encapsulate what I see the as differences in the issues being argued. If you would like to clarify, rebutt, or correct me, please feel free to leave a *civil* comment. Thank you.)

Background: Here is the thread that started this new-ish conversation.

@cartooninperson asked me for an explanation of why I (and by extension, all of us) were continuing to bring up points and rebuttals. Knowing my reply was too long to fit in a 140 character format, I typed it into paint and saved it as a .jpeg file. However, that method is not accessible for everyone, and it is hard to read. So I will transcribe my response into text here:

What seems to be happening here is that you are arguing one point, many of us are arguing another. Those of us who are stating the oranges should stay on shelves are pointing out that his product is accessible to us in that particular type of packaging. Many of the people who are stating the oranges should be pulled have outright stated that it doesn’t matter what is good for PWDs, anyway. We have been called wastes of oxygen, told not to breed, told we are less than human, and that what we want or need is of no consequence. That we should just suck it up and deal with not having fresh oranges. Other people are piping up that the oranges should go because the packaging is wasteful. However, this is not the entire truth.The packages are reusable and they could be made of biodegradable plastic. Furthermore, we are pointing out that there are many other products with much less nutritional value that consume more energy to be made shelf-stable and then be packaged in wasteful packaging, and no one is calling for THEM to be pulled from the shelves. I cannot speak for all PWDs, but I have a hard time opening those types of packages (meaning the yucky  oranges in syrup that are in individual plastic bowls with a film of cellophane on top that I mentioned in a previous tweet), AND I wind up spilling the juice everywhere once I do get them open. So, I do not buy them. However, many of us love oranges and fresh fruit and enjoy the independence of being able to buy oranges that we don’t then have to ask for someone else to peel for us. As I and many others have stated before, it’s not like people are always around, it is demeaning and changes the dynamic between friends/lovers if we have to keep asking for stuff like this, and it is frustrating to have to wait for it to be convenient for someone else to come peel the orange. Many of our doctors advise that fresh fruit is ALWAYS better than canned or juice (another argument others have made – that we should make do with those). The more you process an item, the more nutrition it loses. Now, we have also conceded that there could be more ecologically friendly accessible packaging for this product. However, we do not think the product should be pulled from the shelves outright until such packaging exists. That is like throwing the baby out with the bath water.

What you seem to be arguing is not the same as what many of us are calling for. It all has to do with our needs that should be considered. From all this outcry, it is obvious that there is a market here ready and willing to buy pre-peeled oranges. But what you seem to be suggesting is that the product should be pulled now, that all commercialized packaging should be pulled now, and those foods only be reintroduced once eco-friendly packaging is available. (Please, feel free to correct me if I am misinterpreting your tweets.) So, what we are hearing is, those disabled people with dexterity and fine motor skills issues be damned, you can only have your oranges once there is eco-friendly packaging. Meanwhile, all those of us without dexterity or fine motor skills issues are going to sit over here and eat us some oranges. YUMMMMMMM. This may not be what was intended to be conveyed, but this is the message we are receiving. At least, this is what I am getting from all the tweets back and forth.

If anyone else who is in favor of the oranges staying wants to pipe in on anything I got wrong or that I did not add, please do so. I do not want to seem to be trying to speak FOR all others with dexterity/fine motor skills issues. And if I misstated your meaning, @cartooninperson, please feel free to pipe up. I am trying to explain what I see is happening here, in response to your query to me regarding how what we are arguing is different.

I hope this clears up for you why several of us are pushing back at you. If you’ll forgive the pun, it’s apples and oranges. We’re arguing about apples (the whole underlying issue/ableism/disrespect) while you are only focusing on the oranges themselves (or at least, this is the way it seems). Really, the two arguments are not the same at all.

 

There’s More to the Disability Employment Issue Than Most Abled People Realize

In January, I had to resign from my teaching job due to my disability. It broke my heart to leave the students I considered “my babies,” but I had reached a point where I couldn’t get through a whole day of work without crying from the pain. In fact, most days, by the time I left the school, I could barely move.

If you haven’t read my bio yet, let me give you a nutshell description of my particular “flavor” of disability. I am physically disabled in that I have psoriatic arthritis that is attacking my thoracic spine, lower back, and hips. Bone is deteriorated, cartilage is gone, bones are fusing together – it’s a hot mess, to be blunt. Whether I am medicated or not, I hurt at all times. Continuing to teach at-risk youth who need me constantly leaning over them, squatting beside them, moving technology from a storage space on the upper floors down to my room, etc., was no longer an option. There were also some other things going on behind the scenes once I got diagnosed that made staying impossible. So, with heavy heart, I resigned.

I have been looking for another job for three months. I have been very open about the fact that I am disabled because I do not want to get into a situation where I waste my time and gas to go to an interview with a company that is not willing to make accommodations for disability. Although the Americans with Disabilities Act (ADA) states that companies must make reasonable accommodations, corporations find ways to get around it. The language of the ADA is vague enough that companies can use the term “reasonable accommodation”, which can be quite subjective, to state they cannot make the accommodations that a person with disabilities has made. As has been pointed out, corporations have built physical requirements into their job descriptions that are exclusionary for people with disabilities (even when the physical requirement has nothing to do with doing the advertised job). I have a Master’s degree. I am currently looking for positions which utilize my experience as an education data analyst, administrative assistant, project manager, journalist, graphic designer, and writer, but I am increasingly running into physical requirements that I be able to stoop, carry 50+ pounds, stand and/or walk for long periods, and a host of other silly things that have nothing to do with the actual duties of the jobs for which I am applying.

Additionally, I am encountering another problem. I will apply for a job, have a recruiter or executive call me back very excited about my resume and cover letter, go through the whole phone-interview process, when it comes to that inevitable part:

“Now that I’ve talked about the job and what we are looking for, do you have any questions before we set up an in-person interview?” faceless employer asks.

I take a deep breath and reply, “Actually, yes. Your job description states a person in this job needs to carry 50+ lbs/walk and stand all day/etc., but I would like clarification as to how important this is for the position. Could you please explain how this requirement relates to the position as a whole?”

“Well, you know, just in case we need you to help with something else at some distant point in the future. Why do you ask?”

“Well, is it a deal-breaker? You see, I have a physical disability that prevents me from doing those extremely physical aspects of your job posting. I can do the computer- and phone-based work just fine. In fact, I can do everything listed EXCEPT carry 50+ lbs/stand and walk all day/etc.”

“Well, uh, hmm, I…” (clears throat nervously, stammers out a few words) “You know, those are good questions. Let me check on that and we’ll get back to you on it. Thanks for your time.”

“But wait,” I say, confusedly. “What about the in-person interview you said you wanted to schedule?”

*click*

Then, a few days will go by, and I will either not hear anything, or I will get a generic email thanking me for my time, but stating I am either “over qualified,” “under qualified,” or the company is “pursuing candidates who more closely match our vision for the position.” At one point, I got two separate rejection emails from the same company – one stated I was under qualified, the other that I was overqualified. Both emails were regarding the same position.

So, it wasn’t so much that my academic or experiential qualifications were in question, I get the feeling it has more to do with the fact that I’m “too disabled” for the position.

This mode of thinking among abled employers is a major barricade to persons with disabilities being able to secure positions in the workforce. Many people assume the problem is lack of skills or ability, when in fact the only thing limiting us is how abled people think of persons with disabilities.

Proactive, Not Reactive, Enforcement of ADA

Let me start by throwing out some seemingly loosely-connected facts and figures. Ready?

  • The unemployment rate of persons with disabilities (PWD hereafter) was 12.5% in 2015.  Keep in mind that unemployment statistics do not usually include those who have been looking for a long time or who gave up looking due to lack of viable opportunities.
  • The Americans with Disabilities Act requires that PWD have equal access to facilities, services, employment, goods, etc., as persons without disabilities.
  • Currently, the ADA is enforced only after a complaint is filed.
  • Many corporations adopt a “wait and see” attitude about upgrading their facilities, goods, services, accessibility, employment practices, etc.,  to be fully ADA compliant, opting instead to wait to see if they get sued by someone before they bring everything up to standard.
  • In a nutshell, the ADA applies to everyone who employs individuals,  and  who provides goods, services, communications,transportation, meeting space, etc., to the public.
  • State, local, and federal governments are required to provide accommodations to PWD, whether it is covered under the ADA, Rehabilitation Act of 1973, the Air Carrier Access Act, mandates by the Department of Transportation, or some other statute.

Got all that? Good.

I have a proposal that will not only help PWD to enter or re-enter the workforce, but it will also ease some burden on understaffed and underworked departments, as well as save employers money:  Create a separate governmental entity tasked with proactively inspecting for ADA compliance in publicly-accessed spaces, and appoint specially-trained ADA compliance consultants/inspectors to the Equal Employment Opportunity Commission to investigate claims of discrimination on the basis of disability. (In this proposal, the terms “inspector” and “consultant” are used interchangeably.)

What?!?! Create ANOTHER government office at a time when so many are crying out that we need to reduce governmental reach, not extend it? Are you kidding me?

No, I’m not, and here’s why.  Currently, there are a few privately formed ADA compliance consultant businesses, but there is no such thing as an official program or license for such consultants/inspectors.  Someone can currently claim to be an ADA expert and not know diddly squat about what the ADA requires of businesses and employers. I am not saying this is necessarily the case, but the opportunity to mislead businesses is there.  Corporations could be paying an ADA Consultant an exorbitant fee to make sure they are making all the provisions required by the ADA, and still wind up getting sued for non-compliance.  If an official, accredited certificate program were created, and records kept on file just as one keeps other business licences on file, it offers protections for both the business hiring them and the people acting as ADA compliance consultants.

If the certificate program is offered in multiple ways (via Internet, in person, through the mail) with multiple accommodations built in (ASL interpreters, large print materials, text-to-print, etc.), for a low fee and/or as part of a Return to Work or state Workforce Commission training program, it would allow PWD to train to become ADA compliance consultants. There are already tax credits available to corporations who hire people who have been out of work long term and/or are PWD; this just gives more opportunity to put these people back to work. Of course, it would be discriminatory to only offer these positions to PWD, so hiring would be open to all applicants who meet all the requirements of the program and receive their certificate. Those holding such a certificate could either seek work for the government office conducting the inspections, or could be retained in a variety of ways to help corporations ensure they pass inspection the first time.

What services would they provide? ADA Consultants would conduct yearly inspections on businesses, meeting places, those providing public goods/services, convention centers, schools, hotels, etc., to ensure it is in compliance. Just as  businesses are required to have regular fire extinguisher/fire code inspections, health and safety inspections, and other reviews, this would be added to a business’ list of inspections that are required.  The business would pay a sliding fee depending on the size of the property for this service. This fee is what would provide the majority of the funding for these offices.  To ease the sting a little, businesses could then file for a credit or deduction on their yearly taxes based upon what fee they paid.  Of course, businesses found to be in violation will also receive a fine (depending on how grievous the violation) and a set amount of time to bring the property up to ADA compliance.  If compliance or a schedule to come into compliance is not met within a reasonable amount of time, then the case would proceed to court, where additional, heftier fines could be levied. (However, any fees paid for inspection or fines paid for small infractions would still be far less expensive for a company than if they were sued under the current system, which allows for fines of $55,000 for a first finding of non-compliance, and $110,000 for each additional violation.So this proposal is still a win for businesses).

But what if a company cannot afford the repairs a consultant states are needed, or what if the company disagrees with the findings? Currently, there is already a system in place through which companies can get tax credits for repairs made, and even a system by which they can secure government loans to do so. If a company disagrees with a consultant’s findings, they can file an appeal and request a new inspection by an inspection supervisor, for a fee. If the new inspection finds that repairs are not needed, the additional fee will be returned to the company and no additional fines will be levied.  If the new inspection supports the findings of the original inspection, then the additional fee is retained by the inspection supervisor, fines are levied based upon the level of infraction, and a timeline for repairs is developed. Once the repairs have been made and the company is found to now be in compliance, the additional inspection fee will be returned to the business.  Said business will also receive paperwork detailing how much of a tax credit or deduction the company will receive and which form to use to claim it.

But the cost! What about the cost to the government? There’s already so much national debt!  I can hear people screaming that already. One way to keep overhead low is through allowing consultants to work from home offices, only having to come in to work for scheduled meetings and/or any training that cannot be handled over the Internet.  Reports can be filed electronically using applications such as Google Drive, Dropbox, etc. Together, these measures keep the costs of utilities, maintenance, supplies, etc., low, because the majority of work would be done in the field and in the consultants’ home offices.  One or two secretaries could be assigned to filing, message relay, and other administrative tasks in an existing government office location.  Any training or meetings could be scheduled to accommodate the needs of both the ADA compliance division and the department already housed in that location. As long as the  building is already ADA compliant so as to meet the needs of all workers, there should be no problem.

But how would it work outside of inspections?  Don’t consultants need a place to work, write reports, consult statutes, etc.? Once hired, consultants can be assigned a certain sector of their locality.  This prevents businesses feeling “harassed” by being contacted by multiple compliance consultants.  So not to create a big backup of appointments, the sectors could be further subdivided into time frames (certain months or spans of months) in which that locality is required to have its regular inspection.  When businesses in that sector call in to schedule their inspection, their lead information will be sent to the inspector who is assigned to that sector, and then the consultant will schedule appointments according to the predetermined month that sector needs to be inspected and the availability of appointments. The inspector will conduct the inspection, then return to their home office to do any necessary research (has the location already been fined under the old system, what particular areas of the ADA are applicable to the locality, etc.) and file their report(s).  Inspectors will have a certain time frame in which to file the report so as to allow the business owner and/or property owner (as the ADA stipulates that both entities are responsible for compliance) a chance to file an appeal, respond, or pay any fines in a timely manner. Because of the paperwork and field word involved, consultants/inspectors can only complete a set number of inspections a week.  This number can be adjusted within an allowable range depending on the amount of research and follow up needed on each case.  As time progresses, inspectors will also build a list of contacts with whom to communicate about scheduling future inspections if the company does not contact them at least 30 days before their next inspection is due.

But how will everything get organized in time? What about the logistics of all this? The good thing is, the ADA and the multiple other acts barring discrimination on the basis of disability are already laid out in their individual legislative pieces.  All that needs to be done is to develop a program that certifies that people are experts in these laws, their requirements, and have satisfactorily completed a certificate program attesting to their knowledge.  Course materials would have to be developed that incorporate paralegal studies, the particular inspection techniques (and use of any software, tools, and assistive devices that could act as accommodations to help PWD to conduct said inspections and required research), terminology – basically a mixture of some paralegal studies, some construction/building code studies, exhaustive study of the different statutes and practical application thereof, administrative tasks such as report formats, at least one required class on recognizing ableism as a barrier to access (and yes, even some PWD still have some ingrained ableism tendencies of which they are not fully cognizant), as well as business electives they feel they may need to help them be successful. This will take time! It will not be a “done in two months” kind of program. But the good thing about that is as the first classes of students in accredited programs are working toward certification, the changes needed within the governmental offices can be taking place, as well. This allows these changes to happen organically, rather than in a rushed manner that will hurt the process.

Obviously, there are still some holes to fill. There would need to be a decision made on how much to charge for inspections, how much the fines would be, etc. There will need to be discussions on which of the several different offices that deal with laws regarding accessibility for PWD will actually oversee this new office. Tax credits, deductions, pay scale, how many programs to accredit, how many candidates to allow in, how many staff will be needed – yes, it will be work. But it will be work that stimulates the economy in that it allows the unemployed and underemployed (both PWD and not) to get to work.  Thus these people who were previously unemployed or underemployed will then boost the economy by paying taxes, buying goods and services, moving to different houses, paying into Social Security/Medicare, no longer needing as much public assistance, freeing up an overworked system to help those who are not able to work due to reasons other than being discriminated against by employers.

If one wanted to be really ambitious, one could train more PWD to handle EEOC disability discrimination claims through a home office, as well. How about tax incentives for employers who find creative ways to allow PWD to work from home, use flextime, and other accommodations so that they can perform work where they might not have been able to do so before, not because of a lack of ability, but because of a lack of access? All it takes is a change in perspective and a little thought to make opportunities for PWD to work, to allow access for PWD in public spaces, and make everyone more aware of how much we have to offer.

Whew! You made it all the way down here to the end. This piece is long, I know. But now it’s your turn.  Tell me in the comments what you think. Are there any glaring mistakes I’ve made that you want to point out? (Please be civil in all discourse.) Do you have an idea that expands on and/or improves something I’ve said? Please tell me! My hope is to create a petition to the White House about this, so I want it to be the best proposal it can be.

(The majority of my information about the ADA, legislation for PWD, etc. in this proposal came from http://www.ada.gov/q&aeng02.htm. Other ideas/notions come from my personal experience as a news reporter, administrative assistant, legal secretary, researcher, teacher, and writer. Yes, that IS a lot of different jobs I have held!)

SB50 OIC Ad Creates Shit-Storm of Controversy

Yes, it’s a terrible pun, but the title nearly wrote itself.  However, do not let my use of said pun lull you into thinking that I, too, am going to poke fun at the millions of people suffering from chronic pain who manage their pain through the controlled use of opiates, and therefore suffer from this side effect.  You know, the people at whom this ad was actually targeted.  The people who are already stigmatized enough by society without having them be called “junkies” by the likes of Bill Maher, to have them automatically be assumed to be addicts by the frickin’ Press Secretary and Chief of Staff, of all people.

Once again, the people who know the least about a problem or condition are the ones who say the most about it.  And, the American public having the “if I don’t have it or haven’t ever heard of it, it must not exist” attitude that they do, the ones who say the most about something are the ones that the majority of people are going to listen to.  So, Bill Maher tweets jokes about junkies who can’t shit, and gets thousands of likes and retweets.  The Press Secretary and Chief of Staff bluster about Rx opiates being the gateway to being addicted to everything else, and the majority of the country jumps on the bandwagon to get rid of the evil drugs.  Never once do they think about the people for whom these drugs are intended, the people with legitimate chronic pain issues, caused by documented medical conditions, for whom prescription opiates are the only means by which they can even remotely live a semi-normal life.

I don’t say “normal,” because contrary to popular belief, even prescription opiates don’t get rid of ALL the pain for chronic pain sufferers.  However, this medication is able to dull the pain enough to get it down to a tolerable level where one can attempt to live a normal life – to take pain that is usually at a level 8 (I hurt so bad I don’t want to move) down to a level 4 or 5 (I am still really sore, but at least I can walk down the hall and sit up in a chair without wanting to vomit from the pain).  It is the difference between being able to have a shadow of one’s former life, and actively wanting to die.

It has already been proven this kind of talk makes Americans uncomfortable.  How many different PSA campaigns are there about how one should talk about depression with those who are depressed?  How many times are these PSAs blasted out to the public, only to have people STILL refuse to believe depression is real?  I posit chronic pain, and the underlying health conditions that cause chronic pain, fall into the same category with most Americans.  The majority seem to think if they cannot see it, it isn’t real. If they don’t have it, or haven’t heard of it, it must not exist. So they dismiss it, deny it, make fun of people who suffer from it.  This is how comedians can make jokes about “junkies who can’t shit.” Well, Mr. Maher, it seems you have no problem spraying shit from your own mouth about a subject of which you have no knowledge.

You may wonder, “Hey, Toni Snark, what makes you know so much about this?” Because I’m one of those “junkies” Bill Maher so blithely dismissed in his tweet.  Although I do not currently experience OIC, I used to. I used to take large doses of prescription pain meds to alleviate the pain associated with the psoriatic arthritis that is currently destroying my thoracic spine and hips – the same condition that for more than 5 years doctors swore I could not have because I was 1) too young, 2) the thoracic spine is an unusual place for PsA to strike (apparently), and 3) some doctors feel my having breasts and ovaries means I am prone to hysterics and do not know what actual pain feels like. So, for more than 5 years this autoimmune condition was allowed to attack my spine and hips with no medical intervention. Now my NEW doctors are having a hard time getting it under control.

The pain was (and still is, at times) excruciating. I would wake up screaming in the middle of the night if I just barely twisted my thoracic spine. I would scream so loudly that it would wake up my teenaged son in the next room. Normally a horde of voracious zombies couldn’t wake up my son once he is down for the night, so I know my screaming had to be loud and very frightening to him for it to actually bring him up from the black pit of unconsciousness he calls ‘sleep’.  Just taking a few steps down the hallway at the school where I worked was a lesson in stubbornness and just how much pain one person can take.

I finally asked to see a pain management doctor. First, we tried tramadol, a milder opioid prescription drug.  I was in so much pain that we quickly realized I needed something stronger to be able to function and sleep at night. I switched to hydrocodone/APAP, and for the first time in months, I was able to sleep more than 4 hours at night. I was actually able to focus on my students again. Mind you, I was still in a ton of pain, but it brought my pain levels down to a level where I no longer actively counted down the days until my son would turn 18 so I could kill myself without fear of him being shipped off to live with a biological father he had never met halfway across the country. I still often felt horrible, could not bend or twist, and the thought of walking down a long hallway made me whimper, but I could manage it. And the only reason why I could manage it was because taking opioid prescription medication improved my quality of life.

I stopped taking strong opioids several months ago. I didn’t like how they made my tummy feel, and I didn’t like how they made me itch all over. I asked my doctor to switch me back down to tramadol, which is still a prescription opioid drug, but not as strong. I don’t get as strong a pain relief from it, but it lasts longer. I am still struggling to find a balance and drug combo that will allow me to live a more normal life.  In fact, I had to resign from teaching last month because my pain levels are too high to allow me to endure the physical aspects required for teaching the students. That was a very hard loss for me.  But even harder has been the attitude of former students and people in my life who are supposed to love me.  Comments like, “couldn’t you just suck it up and keep teaching?” or “It’s not like teaching is hard to begin with; why couldn’t you keep doing it?”  That is a subject I will come back to another day, because the bias and ignorance against both invisible disabilities and teaching in general is so great that it requires a whole post of its own.

Let me end my rant toward the comedians and politicians who automatically dismissed all sufferers of OIC as “addicts” and “junkies” by giving them a little advice. My momma once told me “if you can’t say something nice, don’t say anything at all.”  I propose we amend it to state, “if you can’t say something nice, or don’t know what the hell you’re talking about, don’t say anything at all.”

 

An Open Letter to Vendors at PAX South

Dear Vendors:

PAX South 2016 just concluded in San Antonio, Texas.  This event only happens once per year, and draws people from all over the country (and in some cases, the world) to engage in their passion for gaming.  But PAX South isn’t just an event for video game enthusiasts; in fact, PAX South has evolved to include a larger share of tabletop games than the other PAX events when one compares the percentage of exhibition space and usage of the table top free play library with the other PAX events held worldwide (PAX East, PAX West – formerly known as PAX Prime, and PAX Australia) (Source: Preliminary data published by PAX tabletop organizers days after PAX South 2016 concluded).  However, this is not to suggest that video games are any less important at South. Anyone who spent any amount of time in the Expo Hall saw just how much focus there is on electronic games at this event.

As busy as you vendors were during the event, you may not have noticed something I saw right away. Maybe the reason why I noticed is because I am disabled and sometimes need to use assistive devices. Maybe the reason why you did not seem to notice is because you overlooked it. Whatever the reason, I saw a significant portion of attendees in wheelchairs and using assistive devices.  But I also noticed something else:  For the most part, your booths were not set up to accommodate people with disabilities who use assistive devices. One booth for a major audio retailer had carpeting which was loose, making it very difficult to get any traction in my wheelchair. Also, the products on display were too high up to be easily seen by someone in a wheelchair.  Furthermore, the items were so close together in some areas in that exhibition space that one could not navigate a wheelchair, roller, walker, or other assistive device between them.

One booth for an extremely popular fighting video game franchise was impossible for those using assistive devices to navigate. Bays where attendees could try out the game were set up in such a way that only those standing upright could access the controls. They were bolted down, classic arcade style.  I tried to play the game, but could not reach the controls well, and definitely could not see the buttons.  I was reaching up over my head to play.  At this same booth, attendees could enter a tournament to play against each other – but only if they were physically capable of climbing steps onto a raised platform where the tournament was held. I did not see any ramps that would allow a disabled person using an assistive device to access the platform.

A large exhibition area for a popular computer processor company had several computers set up so that attendees could use computers containing their processors and see how well they processed their favorite PC games and websites. Unfortunately, all the computers were up high and attendees climbed up on bar stools to access them.  I did not see any computers low enough that one could access them from a wheelchair.

And it wasn’t just the set up of the booths that was frustrating.  I was virtually ignored at all but two of the booths I visited in the Expo Hall, even when I directly addressed a worker asking for assistance with a product.  It was like I was invisible.  The only two booths that interacted with me were smaller gaming and educational booths.  They were the only ones who seemed to see me as a person.

I am not the only one who noticed.  I had conversations with many other attendees who used assistive devices.  Out of all the people I talked to (and there were too many to count over the three days), only one person had a positive experience with a major retailer bringing her a wireless device that was not bolted down so she could try out their product.

Didn’t you realize where you were? Do you know NOTHING about the make up of San Antonio, Texas?  We are known as Military City, USA.  There are Joint Military Bases all over the city, not to mention the major military medical center located right here.  According to its website, it is the busiest medical facility in the Department of Defense.  Think about that for a minute.  Do you have any idea how many wounded warriors are treated here, and how many disabled service members retire to this region due to the warm climate and access to health care? Do you not realize that many service members are gaming enthusiasts? In fact, the U.S. military uses video games to train soldiers.  Therapists often prescribe video games as treatment for PTSD and to help veterans (disabled or not) cope with civilian life. A major charity mentioned in one of the cited articles, Operation Supply Drop, was even at PAX South taking donations and spreading word about its cause – to send digital gaming items to military personnel in war zones, hospitals, and veterans centers.  How ironic, then, that there was so little accommodation for the disabled by vendors.

Even if you weren’t aware of the number of disabled former military members in San Antonio, did you even look at the demographics here? Did you notice how many disabled persons reside in San Antonio?  According to InfoPlease, San Antonio has 25,806 disabled young persons aged 5-20.  How many of these children are gaming enthusiasts who have parents who buy them games?  San Antonio has 141,640 persons aged 21-64 with a disability.  That is a lot of potential revenue you completely ignored when designing and setting up your booths and spaces in the Expo Hall.  That is a lot of revenue you won’t get if your booth workers ignore the disabled attendees outright.

To be fair, it wasn’t just gaming vendors who blew it on this one.  The food vendors also had an obvious lack of planning for persons using assistive devices to attend the event.  Items placed too high for those in wheelchairs to reach, or having to reach way over other things to get to food items – a veritable nightmare for someone with balance issues.  Then there were the cash registers themselves.  They were placed too closely together for people to comfortably walk between the cashier stations, much less roll an assistive device through.  There was a lack of tables nearby at which one could sit to eat the food they purchased, as well.  The entire set up of the food court was a nightmare for anyone with a disability that affects their mobility.

I would, however, like to point out that Penny Arcade, the organization that puts on the different PAX events, was very accommodating and had extreme awareness of issues affecting the disabled.  From making accommodations for those working the event who are disabled (full disclosure – I was one of them), to training the workers to be on the lookout for those with both visible and invisible disabilities and how to help, the staff at PA was amazing.  I only wish the vendors had been as accommodating and aware.

Please do not consider this letter as an attack.  Look on it instead as an opportunity to do better in the future.  Do not ignore the needs of those with disabilities who want to experience your products in such a venue.  If you make accommodations for us, we will respond in a positive way.  Hire a reputable ADA compliance specialist to help you design at least one or two areas in your exhibition booths to accommodate those of us with mobility disabilities.  Heck, if you just rent a wheelchair or other assistive device and try to make your way through your own booths, you will notice right away what works and does not.

There is a large market of disabled gamers waiting for you all to wake up and realize we are here and have money to spend.  If you are a company that makes accommodations for us, we will respond positively.  If you cannot justify doing it on a purely humanitarian level, then justify it this way:  Just how much money did you miss out on at this ONE event because those of us with disabilities couldn’t get to your products to try them?  As word spreads that your booths are accommodating to us, more of us will attend events like this and spend money.  How much revenue are you missing because you are too blind to see how your current set up acts as a barrier to our spending our money on your products?

Sincerely,

A Disabled Gaming Enthusiast