Theories and Accessibility

Over the weekend I saw the Theory of Everything and really enjoyed it. I also noticed that kept paying attention to things that my friends who have seen it may have overlooked. At one point, Stephen Hawking is eating dinner a few months after finding out he had ALS and I saw that he was using a spoon that was bent to accommodate his adjusted grip, the improvised ramps were another thing that were kind of in the background, but jumped out at me.

The movie, overall, did a good job with showing that a person with a disability is just like anyone else: they fall in and out of love, have children, have jobs and can be just as independent as anyone else with the proper supports.  It also highlighted how being the only caregiver for someone with a progressive disability can weigh on a person. Having a wife/husband/friend who can provide supports is great, but respite is important for the attendants as well.

Attitudinal barriers are something that were touched upon as well. Midway through the movie the Hawkings have moved a bed downstairs on the main floor as he can no longer climb the stairs, shortly after they have their third child and it was assumed by the family members that it couldn’t possibly be child of Stephen Hawking and that the wife and cheated. People with disabilities are often not seen as sexual beings, just because someone uses a wheelchair or has a motor related disability doesn’t mean they can’t/don’t have sex (the functioning of “down there” was less subtly stated earlier in the movie).

I didn’t feel as if the movie tried to evoke a sense of pity or even the “super crip” tropes that are so common in Hollywood. Instead, this was just a well done biographical movie that highlighted a great physicist and the obstacles he faced acquiring a disability starting in the 60’s when access wasn’t the best and the assistive technologies we have today were in their infancy.

What did you think?

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disABILITY and Health

Here in Georgia we often forget about frost bite and hypothermia – when the body temperature drops to dangerous levels due to exposure to the cold.  With an ice storm on the way, it is a good time to think about prevention. 

First, keep the skin covered so there is less exposure to the cold.  This is especially important for people who might have less feeling in their hands, arms, legs or feet.  Warm dry socks and mittens are a must, as well as dressing in layers.  It is also very important to stay dry.  Body heat is easily lost through wet clothing.  Keep an umbrella or rain poncho handy.  If using plastic garbage bags for protection, do not use them around the head or face.  It is too easy for the nose or mouth to become blocked, especially in the wind.

Second, check your skin periodically.  If hands and feet are paler than normal, or nail beds/lips become pale – or worse, blue – get to a warm shelter as soon as possible.  The change in color means the body is not able to keep warm.  Another sign of limited blood supply is pain in fingers/toes, etc.  There is pain before numbness sets in as well as pain when warming up.  Pay attention to the pain. 

Shivering is another early sign of needing more body heat.  If shivering begins, get to a warm dry shelter as soon as possible; add another layer of clothing for warmth; and if possible drink warm fluids, like tea or cocoa.  

If shivering worsens, or one becomes light-headed or confused, the hypothermia is worsening.  This means it is urgent to find a means to get warm as the body temperature is becoming dangerously low.  Do NOT lie down outside at this point – it is important to keep moving to keep the blood circulating at a higher rate.  

The signs of impending death are the exact opposite of what is needed – undressing due to confusion and the determination and desire to curl up in a small space to rest.  This is the animal instinct being activated – not logical human decision-making.  If you see someone in this state, get them help immediately.  It is easy to mistake this level of hypothermia with being under the influence of alcohol or drugs, or low/high blood sugars. Do not ignore it or leave the person lying down out in the cold. Call for help.   It is always better to be safe than sorry when it is so cold outside.

For folks with electric heat, hypothermia is a concern when the power goes out.  Stay in the warmest area of the house – often away from windows.  Stay covered in bed – with a hat on.  If possible, put the whole family in the same space under the covers along with the family dog.  We do not lose body heat as fast when in groups.  If using kerosene space heaters or the fireplace for heat, take precautions to keep sufficient air circulating and flammable material away from the flame.

Don’t forget to check your smoke detectors and fire extinguishers regularly.

Let’s all stay warm and dry!!!!!

 

 

 

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Working WITH not FOR

Prepositions make all the difference. At disABILITY LINK we work with and not for the consumer. Independent Living Philosophy is about taking charge and working with your peers to be in control of your life.  I noticed that I kept having to politely correct people’s pronouns while at the Moral Monday Medicaid expansion rally on Monday. There was a great atmosphere: a lot of energy and enthusiasm for the shared cause we were united under. The problem is that I kept hearing people coming up to me and my coworkers and say: “we’re doing this for you!” And some of the signs had language that wasn’t really empowering for people with disabilities. On the surface this may look  bad, but deep down it’s a great opportunity to educate people who may not have necessarily have worked with people with disabilities before and show them that we are in this fight together.

I love these “teachable moments.” Moral Monday is a fairly new movement in Atlanta and they’ve had a couple of stumbles while working with the disability community, but I feel that we are on a good path for making sure that future meetings and events are going to be accessible, inclusive and informative. This recent event was a success, we have a fantastic turnout, we even had the support of State Senator Vincent Fort, who chose to get arrested with nine other individuals attempting to deliver a letter to Nathan Deal. While speaking with people about Medicaid expansion we were able to share information about ADAPT, a great organization that frequently uses civil disobedience to draw attention to issues and force change.  Some were surprised to learn about ADAPT, but all were interested in learning more and we might even get a few new ADAPTers out of it. Our Independent Living Specialist, Margo, handed out a lot of stickers from a Medicaid rally that were worn with pride. I look forward to working with the Moral Monday organizers to share a message of change that is also empowering for everyone involved.

Learn more about Moral Monday Georgia here: http://www.moralmondayga.com

Like us on Facebook here: http://www.facebook.com/disabilitylink

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Planning for Accessibility

In my mind accessibility is something that should be second nature, especially for meetings and organizations that are tying to appeal to the largest possible audience. Alas, architectural barriers prevent this “second nature” approach from being fully realized. A great example would be from the Moral Monday events that were held at the GA Capitol on January 13th.  Make no mistake, Moral Monday is a great organization advocating for items and changes that impact several communities, including the disability community, yet the morning strategy session was held in an area of the GA Capitol that was completely inaccessible to people with mobility related disabilities. 

When I say that this room was inaccessible, I mean it. If it weren’t so insulting it would be comical. The room was BETWEEN the 3rd and 4th floors. There was absolutely no way to access the room if you could go up or down a set of stairs. How is this acceptable in this day and age? The room should be boarded up and forgotten if they can’t make it accessible to everyone. My anger at the situation was split with a majority going toward the Capitol (which still lacks Braille singnage on a majority of offices and across the street where several state senators have offices there is ZERO Braille in the hallways), but a portion really did have to go to the organizers of the event. This event was really a teachable moment for them, I just with the lesson didn’t have to come at the expense of our staff and consumers missing out on portions of the days events. We look forward to working with the organizers of future events to ensure full inclusiveness and accessibility. 

In online conversations afterwards (with other attendees, not the Moral Monday staff/personnel) many defended the organizers saying: “well, they don’t have any power over the room they were given.” I don’t believe this, there is always a choice. If disABILITY LINK had reserved a room and found out it was in a ridiculously inaccessible place we would not have the event there, we would request another room, a swap with someone else or find some solution, but we would be inclusive.  Making the excuse of: “they couldn’t help it” is not an acceptable argument, it’s lazy.  

I believe this might have been the first event from Moral Monday in Georgia and I look forward to working with our staff and Moral Monday to ensure that it will be the last to have major access issues. Being present and active is the only way to enact change. We will work together for systemic change that will benefit the community, united in advocacy.  

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Let Us In!

Last week I attended the National ADAPT Action in Washington, DC. It was an amazing experience. We fought for the rights of people with disabilities, to get people out of nursing homes and to have a choice in where they live. We marched on John Boehner’s office, we rushed barricades at the White House, we showed up at Tom Perez’s home to make a statement. All of these actions were powerful and empowering. One thing that sticks out the most, and was the source of more tension with the police (even more than rushing the White House) was our standoff at the Capitol.

On the last official day of actions the plan was to go to the steps of the Capitol and deliver an open letter to Congress. We were going to make some speeches and then climb the steps by either walking or crawling up and deliver an open letter from ADAPT to Congress. We marched to  Capitol Hill and I noticed that there were police officers at all of the entrances we passed by. Bicycles, uniforms and motorcycles were all in place, but it didn’t occur that they were there because of us since we were going to the main accessible entrance. It became clear pretty quickly that they were indeed there for us when barricades were set up at the main entrance with several police officers behind them. We were being denied access to our (yes, our) Nation’s Capitol. A building filled with our elected representatives and paid for with our tax dollars. Even more insulting than having our path blocked was the fact that, if you didn’t look like you had a disability you could get through the other entrances. I saw several suited men go in as well as some tourists, yet we were being denied. We proceeded to the other accessible entrance and they actually laid down signs and formed a police line to keep us out of that one at well.

I simply could not believe that we were being denied access to a public building and that the discrimination was so blatant, even behind the police line people were coming and going, as long as you didn’t have a disability and weren’t associated with ADAPT. We held our ground, we looked the police in the eye and refused to back down. Around 100 of us stood firm even after being threatened with arrest. After a bus load of backup (that is not an exaggeration, there was literally a bus load of backup brought on to the scene) and three warnings were issued arrests were beginning, still we stood strong. Then something strange happened, the police backed off. No arrests were made, we found ourselves still denied access to our goal, but our message was sent clearly.

A picture of a large bus with a police seal on the front, the bus is roughly the size of a Greyhoud bus

The large police bus that was filled with backup

 

We were angry, but empowered. We were insulted, yet emboldened. We were denied, but set free by our beliefs and convictions. In the end we probably got more press attention by being denied that we would have by doing our action as planned. The absurd police presence helped gather the attention of some of those cameras that were covering the government shutdown (which was then 2 days old).

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Digging beneath the Surface

I’ll start this post out with a confession: I’m an Apple addict.  I love that company and the products they churn out. That being said, I’m also a technology junkie. I love to play with new gadgets and gizmos (regardless of who makes them) and see how they work and what they can do. I started my computer experience on a Windows based machine and had all the fancy assistive software to make it usable (and nearly died when I saw how much it would have cost had I had to pay for it). Then I got an iPod, which led to getting an iBook (the Apple laptop of that time) and it was all downhill from there.

On Saturday I made a trip to Perimeter mall to get some hands on experience with a product I was thinking of buying and saw there was as Microsoft Surface demo station near the food court. I have read about their response to the iPad (which I love) and decided to give it a test drive. Since I work for disABILITY LINK and have a disability myself I chose to approach the device from an assistive technology angle. I go up, pick up one of the devices and can’t really read it, so I start poking around to see if I can find the accessibility options. I couldn’t. A salesman comes up and asks if he can help me so I simply say: “can you tell me about the accessibility features on the Surface?” he looks at me for a second and then replies with: “well, you have to be specific because accessibility is different for everyone.”

I didn’t know whether to be impressed or annoyed with his response. It’s true, it can be different for everyone, but clearly I’m looking for some kind of visual alternative/assistance. So I ask for contrast settings, magnification and screen reader access.  Instead of addressing the items that I asked about he goes into a sales pitch where he drops buzz phrases like “full Windows experience” and “full Microsoft Office Suite.” I had to stop him mid spiel and inform him that these features are great, but only if I can see them. When I asked again about making things bigger his solution was to attach it to an external monitor (because that’s what people want to do with a tablet device, right? Attach it to an external monitor?). At this point he saw my exasperation and called for the second man working the station. The second man said (and these were his words): “oh, I don’t think it does that,” when asked about magnification.

At that point I thanked them for their time (even though it was a waste of mine) and walked away, frustrated and annoyed. I wasn’t looking to buy a Surface, but after that experience I really don’t want one.  I’m sure that there are accessibility features tucked away somewhere in that device, but they really need to train the demo “specialists” about all the features of the device they’re supposed to be selling or at least getting people interested in.

 

 

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MARTA Should not be Privatized

This was an e-mail I received today from Paul Mclennan, a disABILITY LINK board member and transit advocate.  He makes some excellent points here and I wanted to share it with you all.

MARTA SHOULD NOT BE PRIVATIZED

 For many years now, there has been discussion at the state legislature about privatizing MARTA. In recent weeks, it has intensified. In fact, the chair of the MARTA legislative oversight committee MARTOC, Mike Jacobs, has said that “privatizing some MARTA functions is essential.” Privatization is being presented as a necessary move because of MARTA’s ongoing financial crisis. MARTA predicts a $33.29 million deficit in this year. Just as we saw with Grady Memorial Hospital or the proliferation of charter schools, seizing public services by private interests is the preferred choice of many politicians when dealing with financial problems of institutions.

 What does privatization mean? Essentially, it is the transfer of public assets and services owned and performed by government agencies to businesses and individuals from the private sector. Privatization results in the replacement of public participation and institutional responsibility with a profit motive. Private sector decision making is private– the community has no rights to discuss and make policy. Instead of people governing, markets govern. Instead of service-providing, making money becomes the driving force. The people who suffer the most from this policy are those who have been traditionally marginalized from the seats of power – the poor, the working class, people of color (especially women), and those with disabilities.

Who is responsible for the fact MARTA is continually in crisis? The answer is found in MARTA history. MARTA was a public system set up to fail because of its funding structure. MARTA’s operating budget depends on what it collects at the fare box and the one-cent sales tax that Fulton, DeKalb, and the city of Atlanta agreed to levy in 1971 in order to create the system. For racist reasons, Gwinnett and Clayton rejected the sales tax and refused to join. This meant a “metropolitan” system was reduced to serving just two counties. The other huge factor in this set-up has been the fact that MARTA is the largest transit system in the country to receive no operating help from the state.

Privatization has a proven track record of failure. For example, the privatization of the Atlanta water and sewer system in 1999 led to the city cancelling its contract with United Water after four years of terrible service. MARTA brought back in-house its paratransit service in 1997 because of all the problems with the private contractor, Dave Transportation. In 2004, the British multi-national, First Transit, began operating the CTRAN buses in Clayton County. Three years later, MARTA took over the service. The bottom line is that the profit motive has no place in public transit. There are some necessary services that a society provides that are not designed to make a profit – fire, police, libraries, schools, and mass transit.

Other funding mechanisms, including state-funding must be found to restore MARTA to its rightful place at the core of any regional system that will be developed in the future. In order to correct the racist history that has had such influence on the lack of development and maintenance of MARTA, it will take a social movement led by those most affected – transit dependent riders and transit workers – to demand that MARTA remain in the hands of the people not the profiteers.

The Atlanta Public Sector Alliance urges all residents of Metro Atlanta to stop this take-over of public assets for the enrichment of a private few. Let’s organize for a regional transit system that is just and equitable, democratic and well-funded, with universal design to facilitate the mobility of all. Only a public MARTA can achieve these goals.

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