MS med makes cold worse?

I never get annual flu shots because I don’t want to help my immune system in any way. I’m at war with my immune system to a certain extent because it is at war with me.
 
So when I got this cold at first I kinda thought it was cute, because my immune system seems like such a bully.
 
But now three weeks into the monster cold — which I only call monster cold because I don’t usually get colds — it has lost its charm.
 
Seldom sick as a kid
 
I was never a very sickly child. I had chickenpox once, and mumps, which kept me out of school for the requisite time but I was not prone to getting regular colds.
 
As a young adult, I did occasionally catch whatever was going around, but was never down for more than a few days.
 
Once I was diagnosed with MS, though, I noticed how rarely now anything makes me sick. I assume that this is evidence that my immune system is superstrong and to be fought against as it is attacking me by misguided accident.
 
But now obviously my immune system is not in super mode.
 
Gilenya works
 
The fact that I got this cold suggests to me that the current MS med I’m taking is doing it’s job for me, thwarting my immune system by restraining lymphocytes from being released by my thyroid. (See previous post on Gilenya.)
 
However, it is driving me nuts not being able to speak. My laryngitis was so bad at one point: I had called customer support for my new HP laptop and it was voice-response only. It couldn’t figure out what I was asking for. Frustrating.
 
A friend gave me a bottle of Echinacea left over from when she was fighting a cold.  But it’s from 1997 and in small print on the side it says “Not recommended for individuals with auto-immune conditions.”
 
And while there is now some debate over whether MS is in fact an auto-immune disease, I prefer to err on the side of caution.
 
Does OTC negate it?
 
I’m not sure if avoiding taking any cold medication is the wiser decision here.
 
My doctor did advise me that “being on Gilenya doesn’t mean you can’t take symptomatic cold remedies.” But he also concedes that it is “(h)ard to relate this particular problem to Gilenya…”
 
So do I risk feeling better and maybe blocking the great work this drug is doing?
 
I think I’ll just go back to bed and think about this tomorrow!
 
Things I’ve learned this week
 
PNG image

Tagged : / / / / / /

43 hours without electricity

Or lessons I learned from the outage.
 
We lost power on Saturday night at 8 PM and it stayed off until Monday afternoon at 3 PM. 43 hours. Not anything like what other people have gone through, but disturbing nonetheless.
 
There were a few emails the day before, warning us that they would need to shut off electricity in advance of the powerful wind as a precaution. Given the recent, disastrous fires, it is easy to agree with the reasoning.
 
But really? Is this the best PG&E HQ could come up with in the two years since Paradise? I think this is a distressing lack of imagination! Even my cousin in Washington said “Somehow many other countries have figured out how to run the power lines underground. Perhaps they could draw us a little picture.”
 
OK, I do believe in climate change, both natural and man-made, but I also
living in Hayward and suffered through the Oakland Hills firestorm in 1991, so this is hardly a recent problem. If burying the lines was so expensive back then, we could’ve at least started saving then. Maybe had a bake sale? Just sayin’
 
The outage
 
We lost power on Saturday night at 8 PM and it stayed off until Monday afternoon at 3 PM. 43 hours. Not anything like what other people have gone through, but disturbing nonetheless.
 
With advance notice I was able to put fresh batteries in my flashlight and charge up my iPad and cell phone. In present day society, being able to text and listen to podcasts while the power is out is not a hardship. I was able to ration my battery accordingly.
 
Like camping
 
I am heat sensitive like many MSers but I do not use an Air conditioner at this time. Luckily if  I needed an air conditioner I could be driven to a local cooling station, for example. Usually in a community in crisis there are places that are running on a generator.
 
Another friend asked do you have a plan if you have to get out? Answer yes. In fact my husband keeps the gas tank in the truck above the half full level at all times, and has it already stocked with emergency supplies. So at a moments notice (well for me that’s more like 10 minutes!) we just have to get ourselves out the door and into the truck.
 
Debrief
 
Ultimately this could have been way worse. Clearly my exit plans rely on rely on friends and family to help me out of the house, or to drive me somewhere. I‘ll continue to mull exit options for the future, but I guess you never know what you don’t know until after the event.
 
So for the next power outage should get: hand crank radio, solar powered or battery-operated cell phone/iPad charger, maybe some cans of cold coffee and a battery operated fan?
 
Which makes me think of preparing for camping or a zombie apocalypse (digression: would zombies be a danger to me since I notice that mosquitos no longer will bite me now that I’m taking a DMT, probably my blood tastes bad to them, although that is anecdotal so could be applicable just to me…)
 
What I’ve learned this week
  • Hoarding is twice as common among people with MS versus the general population
  • Most of us have inherited some core limiting beliefs about money, like ‘Money doesn’t grow on trees’ or ‘Waste not, want not’ so changing your underlying programming is critically important in manifesting a different reality. Cairns, J. A. (2015). The abundance code
  • 30 days is a good length of time for developing a new habit. Scott, S. J. (2015). Exercise every day: 32 tactics for building the exercise habit (even if you hate working out).

Tagged : / / / /

Too old for Gilenya?

In the Gilenya Facebook page we recently had a discussion about this article: Meta-analysis of the Age-Dependent Efficacy of Multiple Sclerosis Treatments
 
A meta-analysis in scientific thinking is a review of multiple previous studies to try and confirm a new hypothesis. In this case, whether the efficacy of MS drugs declines with the age of the patient and finally becomes ineffective.
 
MS Drugs
 
Drugs approved for MS are not drugs that can cure the disease. Nothing can cure the disease. We still don’t even know what causes it.
 
So the drugs approved for MS are basically drugs to halt progression of the disease. (And like I said, the cause of which is still unknown, so what halts the progression is still technically unknown.)
 
At this point there are so many DMT drugs for MS (17 to date) that attempt to work in many different ways. It can be a crapshoot.
 
But this article concludes that all DMT drugs that work on MS begin to decrease in efficacy after the age of 53. I wonder if this is why my doctor keeps asking me how old I am?
 
Are expensive
 
MS drugs, especially in this country, are exceedingly expensive. Not to mention the hundreds of others that aim to treat symptoms.
 
In one example, in 2004 the MS Society estimated that “the major drugs approved by the Food and Drug Administration (FDA) for relapsing- remitting MS can cost between $10,000 and $14,000 a year.”
 
Given the news that the cost of prescription drugs in the U.S. is now the highest in the world. Can you imagine what our costs are today?
 
And are difficult to measure
 
And speaking as someone who now has entered the secondary progressive phase of the disease without active exacerbations, it is often hard to tell if the drug I’m taking makes a difference.
 
The only really accurate test we have is the MRI, which can show If there are newer lesions. The idea is that if there are newer lesions the drug that you’re taking is probably not working as its goal is to keep new lesions from forming.
 
But there have been no tests that show that new lesions have any correlation with symptoms. So does the appearance of new lesions on the MRI mean that the disease itself is advancing? Has being on this drug made any difference.
 
What I’m wondering
 
So here’s my dilemma. I have continued to decline over my lifetime.
 
And it is concerning to me that I keep paying x number of dollars to stay on this drug all while studies are showing that stopping it now might not hurt me.
 
On the other hand, other studies show that some people who stop it, even those that switch to something else, experience a major rebound exacerbation resulting in further decline from which I cannot recover.
 
And there is no way to tell in advance how I will respond.
 
Ergo, if I stop the drug based on these latest studies, I will never be able to get back to where I am now if I decline further after doing it.
 
I will be meeting with my neurologist next week and having a chat about this. Stay tuned.
 
Things I’ve learned this week
  • Nasturtium leaves, flowers and pods are all edible
  • Lede is a real word, as in “Way to bury the lede, Amy!” Apparently that’s the noun! I’ve been imagining that phrase wrong.
  • Weight-bearing describes a person who is able to carry their own weight with at least one leg
  • Three inputs to your brain for balance: sight, auditory (vestibular), and proprioception, which is the medical term that describes the ability to sense the orientation of your body in your environment
  • Maybe a picky eater is actually only picky about the method by which the food is prepared
  • Inspiration porn example: ‘He asked her to the prom even though she has Down’s syndrome.’ But should be just like it’s not cool if you say ‘He asked her to the prom even though she is Asian.’
Tagged : / / / / /

Isn’t investing gambling?

It is understandable that we MSers, facing exceptional circumstances, want to protect any money we make from being squandered.
 
Our medications and healthcare costs are astronomical. Also, as a population, we physically may be forced to retire prematurely.
 
Like the U.S. Securities and Exchange Commission (SEC) says “Knowing how to secure your financial well-being is one of the most important things you’ll ever need in life.” 
 
This is especially true for us.
 
The MSer’s finances
 
Traditionally banks paid enough interest to make just saving what we could until retirement prudent. Unfortunately, not anymore.
 
How “safe” is a savings account if you leave all your money there for your working life, but the interest it earns doesn’t keep up with inflation when you are no longer working and need it?
 
This is why many people keep some of their money in savings, but look to investing to amplify their other money. For most people, the only way to attain financial security is both to save and invest over a long period of time. 
 
Generating vs. earning
 
I suggest we think about our finances as needing to generate income rather then simply earning it. Viewing it in terms of generating an income “takes the power out of (the provider’s) hands and places it into your own.”
 
It reminds us that we still have a lot of control over our future, maybe even more than this disease does.
 
I work hard for my money. It makes sense that my money should be working for me, too.  Why should investing be only considered the playground for the wealthy?
 
I resolve that it shouldn’t be. And for those of us in the U.S. with chronic disease, who live in this capitalist society, it is even more imperative.
 
Isn’t it gambling?
 
Well OK, yes and no.
 
For example, my clutter is gambling: 
“I purchased bargains with potential usefulness. I bought things as a gamble. I gambled on the chance that one day, my dreams would come true. I would turn into the kind of person who mended expensive but damaged clothing. I would be the tinkerer who repaired a lamp that made guests gasp in delight…(But) an amazing bargain that ultimately makes my life more difficult isn’t an amazing bargain at all.”
from Dana White’s book Decluttering at the Speed of Life
 
So is playing baseball:  “You can’t steal second base and keep your foot on first.” (Frederick B. Wilcox)
 
Thus I guess that investing is gambling too, but it’s risk that can and should be mitigated.  (You should never risk more than you can lose and still be okay.)
 
So “learn to earn”
 
While we probably aren’t born knowing how to invest, I think everyone should learn at least the basics.
 
Visit the SEC website. If you are still working, take advantage of webinars, podcasts and classes offered by your 401k provider. Be careful about the sources of your info, but you can teach yourself.
 
And ask for help if you’re scared. The MS Society offers free or low-cost consultations with experts
Tagged : / / / / / / /

Genial Gilenya

I am now taking the oral medication Gilenya (fingolimod). It was first synthesized in Japan in 1992 by chemical manipulation of a naturally occurring antibiotic, and finally approved by the FDA in 2010 as “the world’s first oral MS drug“. 
 
I call it genial because compared to giving myself daily shots, it is just a daily pill I swallow. But “genial” by no means suggests benign. This drug is as toxic as everything else I have tried. Incidences of PML occurring in people taking Gilenya do happen.
 
This Method
 
Everyone’s immune system contains lymph nodes, which are tiny glands containing immune cells (AKA white blood cells) called lymphocytes. Lymphocytes are usually helpful, but in MS they get confused and attack the central nervous system (CNS), and permanently damage the myelin sheath.
 
Gilenya activates sensors on your lymph nodes to restrain some white blood cells. That way, these blood cells aren’t released into the bloodstream, where they can attack. (Other lymphocytes are still circulating and available to do their job, watching out for intruders like viruses and bacteria.)
 
It also activates sensors on your heart, which can cause your heart rate to temporarily slow down. So it is recommended that all users be monitored by a medical professional for at least six hours after the first dose.
 
My Experience
 
I have been taking Gilenya since April 2012. This is from an earlier blog post:
 
…I packed my backpack with items to stave off the boredom of sitting around that long: two books I am currently reading [one fiction and one non-fiction], a book of Sudoku puzzles [I’m addicted!], lip balm…
 
We also brought a cooler with yogurt, granola bars, and sandwiches.  [My husband] brought a fingertip pulse oximeter so I could check my pulse regularly on my own.
 
In the end, the whole experience was pretty anti-climactic, which is probably the best-case scenario, really.  I read one book the entire time, and they let us leave before the rush hour started.
 
It was a record heat in SF, which lent the whole outing a surreal feel, and now that I’m onto Day Five, it is like it never happened…
 
It’s now been 6 years and I have tolerated it fine, but it has not made any amazing difference, as I had secretly wished. 
 
Things I’ve Learned
 
Gilenya might increase your risk of skin cancer. It can render a “live” vaccine inert while using it. And it can interact with a multitude of drugs, including vitamins, and herbal products.
 
It is rare but macular edema (a correctable eye condition causing swelling and blurry vision) may occur within the first 3-4 months of starting. It may be confused with an MS exacerbation, so check with your doctor, and consider annual ophthalmology appointments.
 
Finally, I have started to see reports about a “rebound relapse” phenomenon when users go off it. Obviously, once you go off, you should expect that the “door” of all lymph nodes is no longer being guarded so you most likely will resume MS where you left off.
 
But in about 25% of patients, there is an even more aggressive worsening of MS after stopping and these patients “do not return to the level of function that they had before or during treatment“. This worsening most often happens within 12 weeks of stopping. It is definitely something to consider before you start if you think you will want to go off it to get pregnant, for example.
 
Other stuff

Tagged : / / / / / / /

Troublesome Tysabri

In 2004, a new MS drug was approved by the FDA. As opposed to an interferon, Tysabri (natalizumab) is “a monoclonal antibody”.  For more explanation, try this.
 
It blocks white blood cells from binding to molecules which want to drag them into the brain where they would cause inflammation.
 
As an aside, at this point, all the MS meds aim to reduce inflammation in the brain. This is a primary goal. Symptom management. Because we STILL don’t know what causes the disease. Ergo we still can’t say any of them “works” beyond their ability to reduce inflammation in some brains.
 
In healthy (read ‘non-treated’) people this process is desired. It happens when the body is fighting an infection. Without this process, those on it are more susceptible to infection. The body is without one of its tools.
 
Just a year after it was approved, my neuro switched me. 
 
My First Infusion
 
When I began Tysabri I was cautiously optimistic. It was a big deal: a new drug administered by monthly infusion as opposed to those icky (to me) daily shots. So I went for my first infusion on Thur., 2/24/2005.
 
At this point, I needed to walk with a cane, I was experiencing some rapid loss of energy daily (fatigue) and had a bout of double vision. But the infusion went fine, and I was hopeful I’d see improvement soon.
 
I had just moved in with my boyfriend. So the next morning we watched the news together in horror: scrolling across the bottom of the screen was a notice that Tysabri had been taken off the market because several subjects of its latest study had died!
 
The fallen test subjects had developed a severe brain infection, called Progressive Multifocal Leukoencephalopathy (PML). 
 
PML
 
It is described as “a viral disease characterized by progressive damage (-pathy) or inflammation of the white matter (leuko-) of the brain (-encephalo-) at multiple locations (multifocal).”
 
We now know that PML is caused by the JC virus, something we all already carry, but is usually kept in check by a healthy immune system, something we MSers don’t have. 
 
Other risk factors include duration of therapy and presence of the anti-JC virus antibodies. 
 
If they aren’t already triggered, these antibodies might appear after time on Tysabri, for example. This is what doctors are looking for every six months; it’s a “marker”–not that the individual definitively has PML, but that they are more likely to get it.
 
My Second Infusion
 
Eventually the drug was brought back to market, based on the reasoning that its benefits were greater than the risk. And in 2011, my neuro tried me on it again.
 
And again, the first infusion went fine. I had regressed to using a wheelchair to get around and I was tele-commuting full-time from home. Again I felt cautiously optimistic.
 
The next month I was sitting next to another MSer and she was saying how great she was doing on the drug. I nodded and smiled, hoping for the same.  
 
Suddenly she looked at me oddly and said “You’re starting to break out in hives. I can see it on your face! Aren’t you itchy?”
 
The nurse rushed over and discontinued the infusion right away. As she pumped me full of Benadryl and Solumedrol, she told me that I was now hypersensitive to Tysabri. That ruled it out for me ever again.
 
I admit I was disappointed. 
 
This is on the 2019 Safety Information: “Patients who receive TYSABRI for a short exposure (1 to 2 infusions) followed by an extended period without treatment are at higher risk of developing anti-natalizumab antibodies and/or hypersensitivity reactions on re-exposure”
 
Helpful tip: Know the medicines you take. Keep a list of them to show your healthcare provider and pharmacist whenever you get a new medicine.
 
Other stuff

Tagged : / / / / / /

Caustic Copaxone

My liver toxicity from Avonex meant that I couldn’t take anything else with interferon, ruling out all other MS drugs at the time, except for one: Copaxone.
 
Copolymer-1, as the chemical was originally called, was discovered by scientists in the 1960s in Israel. Again, I don’t know what they were looking for, but they discovered that it suppressed MS-like disease in mouse models.
 
[As an aside, this is called Experimental Autoimmune Encephalomyelitis (EAE), still accepted today as a murine model for this disease. Interesting because MS doesn’t seem to appear in the animal kingdom, or maybe their lives are just too short to foster development of a slow-progressing disease like this. So scientists needed an animal model to study and use in tests. But we still don’t know what causes human MS, so the thing researchers use to induce it in animals may sometimes cause unintended consequences hard to tease out (i.e., was our result due to the mechanism of the disease itself or a reaction to the variable, which is not found in human subjects?) Something to make you go “hmmm”. ]
 
Drug development continued and it was finally approved for the Relapsing-Remitting form of MS (RRMS) in 1996.
 
How It May Work
 
Now known as glatiramer acetate (brand name Copaxone), it is a synthetic (man-made) protein that mimics a component of the myelin sheath and seems to block damaging cells, though the process is still not understood.
 
Some researchers believe that it acts as faux material to lure and distract the attacking cells away from their real target, but others believe it actually alters the body’s immune function itself.  Concerns about this persist but there is no evidence yet to prove it.
 
Anyway, my neuro switched me to this. I administered myself sub-cutaneous shots of 20mg daily for 7 years, from June 2003 until July 2010.
 
More recently the FDA has approved a newer 40mg dose injected only 3 times a week, and there are some reports that those taking the higher dose less often have fewer side effects. But the lower dose and schedule are still used as well.  
 
Ugh
 
I’m not sure if I would’ve welcomed news of a less frequent dosing option. I hated the shot I took everyday, and I doubt a higher dosage less often would’ve made that much difference. 
 
I rotated injection spots on my body as I was instructed, but no matter where I shot, it felt like I was injecting acid. 
 
For the first few years, I tried to dutifully apply ice packs to the area, both before and after it, as I was told, but it always seemed to make it worse.
 
Finally one day I tried heat instead. Ahhh, the relief!
 
Who’s In Charge Here?
 
Wanting to check that I wasn’t harming things, I called the helpline. But the nurse on the other end told me that she hadn’t received any information ether way. But as far as she understood it, it wasn’t affected by heat.
 
We decided that if a heating pad worked for me, I could continue doing it until I heard otherwise.
 
And as I was looking over new prescribing documents about this drug, I found this: “Before use, allow the solution to warm to room temperature.” Doh! Why didn’t I think of that?
 
Helpful tip: Know the medicines you take. Keep a list of them to show your healthcare provider and pharmacist whenever you get a new medicine.
 
Other stuff

Tagged : / / / / / / /

Ack, hepatitis!

In June 2003, 2-1/2 years after I had started Avonex, I developed a liver toxicity to it and was advised to stop it immediately. My medical chart read “elevated liver enzymes/hepatitis”!
 
Apparently, this is a fairly rare occurrence (1-2% of patients), but requires “prompt discontinuation of therapy.” Sigh.
 
The Organ 
 
The liver is described on WebMD as “a large, meaty organ that sits on the right side of the belly. Weighing about 3 pounds, the liver is reddish-brown in color and feels rubbery to the touch.”
 
It goes on to say that “The liver’s main job is to filter the blood coming from the digestive tract, before passing it to the rest of the body. The liver also detoxifies chemicals and metabolizes drugs. As it does so, the liver secretes bile that ends up back in the intestines.”
 
[As an aside, this is an interesting realization to me considering that today there is a lot of focus on the “gut microbiome” and its role in MS.]
 
Liver Toxicity
 
Anyway, the ER doc drew several vials of blood and then ordered me home to await the results. Based on my yellow-ness, he was expecting to have to admit me to the hospital.
 
Luckily the tests came back as “consistent with damage from toxins, probably medications” and no hospitalization was required. But I was directed to stay home from work on short-term disability while my liver recovered.
 
I also had to go for biweekly blood tests for the next two months, then monthly for the rest of a year. 
 
I actually got “get well” flowers from work, and after five weeks returned to my full-time duties, good as new.
 
The Biopsy
 
In Sept. I had to have an out-patient liver biopsy to make sure this was just a drug-induced hepatitis. The ruling was that any interferon –which was almost all of the MS drugs at the time– were now off-limits to me.
 
While doctors assured me that my liver enzyme levels had gone back down to normal, I wondered if I could help keep it that way. So I did a little online research on which foods and supplements might help.
 
I now regularly drink green tea (but studies show coffee may also be prophylactic), eat nuts and other mono-unsaturated fats, and try to limit my carbs and alcohol intake. (For example, I learned that the liver needs 2 weeks alcohol-free to heal.)
 
The liver is arguably your hardest-working organ, takes a lot of abuse and is one of the easiest to damage. Luckily, it is able to regenerate itself better than any other, too, so it is important to take care of it!
 
Other stuff
Tagged : / / / / / /

Anxious Avonex

In December 2000 my doctor and I decided to start me on Avonex.
 
A younger sibling to Betaseron, Avonex was approved by the FDA in May 1996. It is also an interferon – beta 1A versus beta 1b – and it works in a similar way, attempting to tamp down the inflammation in the brain.
 
But again, even today, the way it works in MS is not known.
 
And as far as the availability of a generic, it is a “biologic” drug which means it is made from human or animal materials (complex biotechnological process) rather than through a chemical manufacturing process.
 
Starting Regular Deliveries
 
Most people who take any of the interferons “will have flu-like symptomsearly in the course of therapy (emphasis mine). So the instructions recommended I take it with something like ibuprofen to reduce the expected fever. 
 
These days it comes in other forms, like a prefilled syringe or even an epi-type pen, but back then each dose came as a kit with a vial of powder, a “diluent” (water), a syringe and needle, plus various small packets of rubbing alcohol and bandages.
 
My regular deliveries also included a small sharp’s container for disposal of used syringes and needles.
 
Learning to Inject Myself
 
Avonex would require that I give myself a shot every week.  So naturally I asked my friend and neighbor to join me at the training session so we both could administer it to me.
 
It was kind of eye-opening that sticking a needle into an orange was so similar to giving myself a shot. I was surprised at how easy it slid into the skin. I don’t know why but I expected some resistance! 
 
The nice thing about Avonex is that it is a weekly injection. So I never had to alternate injection spots.
 
But one problem I had at that time was what to do with the full sharp’s containers. There didn’t seem to be a standard procedure for how to dispose of needles, much less a sharp’s container.
 
Now I notice an instruction on the directions: “Check with your healthcare provider about the right way to throw away the container. There may be local or state laws about how to throw away the used syringes and needles. “
 
My First Shot
 
The first time I did my injection I deliberately did not take it with ibuprofen because I wanted to see how severe the fever would get. Lo and behold, it did.
 
Later I was scolded by a doctor friend of mine. She said that since fever is a warning signal to the body, and since I had been warned to take something with the injection for just that, I should’ve just done it to begin with! I always did after that.
 
But I never could learn to inject myself with ease. Every week I sat holding the shot in my hand above my thigh willing myself to just plunge it in.
 
I Develop Jaundice
 
Then one day I couldn’t keep my breakfast down, vomiting. Next I was walking by the mirror and I noticed that my eyeballs were yellow. So I went to an emergency clinic where I was diagnosed with severe liver toxicity. I was told to stop the Avonex immediately.
 
Unfortunately this meant that any interferons were now off-limits to me. That was most everything else on the market for MS at the time. But not everything.
 
Next up, Copaxone.
 
Other stuff

Tagged : / / / / /

Lorna’s briefest history of the ADA

Curb Cut At Night (Luke Keller ©2019)
Curb Cut At Night (Luke Keller ©2019)
As an MSer, I feel like I’m kinda late to the party with regards to understanding how important the ADA is. I was diagnosed in 1991 but didn’t really experience physical disability until later in my life.
 
Why I care
 
The NMSS says “The ADA covers almost everyone with MS — not only people who use wheelchairs. It covers every person with an impairment that substantially limits one or more major life activities.”
 
How lucky am I to be living in this era? I take my electric wheelchair for coffee, I do all my banking online, I am able to work from home as a reasonable accommodation, and I write my blog with voice-to-text dictation.
 
mini-lift
Mini-Lift (Luke Keller ©2019)
In fact, in his book, Enabling Acts (see full site below), Lennard Davis says “Today we routinely see kneeling buses and buses with wheelchair lifts as a part of the urban landscape. It is an aspect of the success of the ADA that many of its accomplishments are now invisible to us since they are so much a part of our lives.” (Emphasis mine)
 
How it came about
 
For example, one city might mandate a reserved parking space close to the entrance of stores. But it wasn’t a federally mandated law, no comprehensive legislation. It was a catch-as-catch-can basically wherever needed.
Pool Lift (Luke Keller ©2019)
Pool Lift (Luke Keller ©2019)
 
Before the ADA, lawmakers were passing little laws here and there to correct disparate problems that suddenly (to them) popped up.
 
Then in the 1960s, civil rights for disenfranchised groups seemed to culminate in the Civil  Rights Act of 1964. And while in the immediate aftermath, the feeling among lawmakers was that trying for disability civil rights then was way over-reaching, the seed was planted.
 
Then in the 1960s, civil rights for disenfranchised groups seemed to culminate in the Civil  Rights Act of 1964. And while in the immediate aftermath, the feeling among lawmakers was that trying for disability civil rights then was way over-reaching, the seed was planted.
 
According to Davis, the initial idea behind the ADA was sparked by language slipped into what would become the Rehabilitation Act of 1972 for soldiers who were wounded in Vietnam. It said “No otherwise qualified handicapped individual in the United States, as defined in Section 7(6), shall, solely by reason of his handicap, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving federal financial assistance.” After many pushes, it was (reluctantly) signed by Nixon in 1973.
Bus driver lowering ramp (Luke Keller ©2019)
Bus driver lowering ramp (Luke Keller ©2019)
 
Next, after 20 years, and presumably once we had become used to the idea (sigh), the non-partisan National Council on Disability drafted the first version of the Americans with Disabilities Act. There was more political back and forth, but finally it was signed into law by Pres. George H.W. Bush in 1990. Then further amended and signed by Pres. (Bill) Clinton in 2009. Phew!
 
We made this
 
Some people are convinced that programs as monumental as the ADA will never again pass in our divided and hostile government. I hope that is not the case. As a collective, we Americans have shown the we can come up with all manner of clever solutions. 
 
Reading about the ADA made me realize how impactful it can be when the two parties of Congress work together to produce something for our common good. And it’s not perfect, but it makes space to let the creativity of society continue to reinvent how things could be made easier and more useful. 
 
Related stuff

Tagged : / / / / / /