[mike-huddleston]

Good morning. I switched from Spinraza to Evrysdi in September and use the same pharmacy. Other than the very first shipment being sent to the wrong address, I haven’t had any issues. They’re not great, but nothing as frustrating as you’re describing. I have it down to usually just starting my second bottle of previous shipment when the next one gets scheduled. Personally, I’d rather have it early than late, so no big deal for me. You can also sign up for text refills to see if that helps. I use it, get a text that I reply “Yes” to within 72 hours and then it’s just a matter of when it will be delivered. That may be different based on your prescription insurance benefits.

As far as them asking weight as another comment addresses, it may not be any of their business, but if it’s a data collection point being used to assess the need for higher dosing amounts like BioGen did over the last few years for Spinraza, they already have the data and it may not be a bad or for nefarious reasons.

Good luck! I hope your experience improves.

[mike-huddleston]

I think part of this potentially stems from already feeling a little awkward in some social situations. There are certain expectations that we just can’t adhere to. Additionally, people often don’t know how to react around those of us in power chairs. And some of it may also be related to being concerned with others’ expectations of us. Over the last few years, my right arm and shoulder have gotten weaker (I’m in the process of switching from Spinraza to Evrysdi to see if there are any differences).

This was never an issue for me before, but shaking hands has become more difficult. That’s awkward and even “bro hugs’ are a challenge. I try to modify my alignment with those I expect will want to shake hands as some positions are easier for me. That doesn’t always work and extending my right arm and hand is difficult if not impossible now in some angles. I was always raised to exude confidence with a firm handshake, so this has been an adjustment for me. I do the best I can, but hopefully, all or most other aspects of the interaction are positive, and the person tends to understand. Easier said than done, but I just don’t worry about it.

So with @angel ‘s permission, have the confidence of a drag queen and make the best of the situation (love this, BTW). If you feel like explaining, do so, but don’t feel like you owe an explanation or an apology. You are who you are; embrace that and having that comfort level and confidence with yourself may help you – and them – overcome any awkwardness.

[mike-huddleston]

I’m with Susan. You will absolutely need a neurologist to get this. A PCP cannot prescribe either of our current treatment options. You will need a clinical confirmation of your diagnosis. You will need to have a PT assessment to report your current Hammersmith and RULM scores. Neither test is something any PT can administer and likely isn’t even familiar enough to adequately or accurately assess your situation and condition. These can also be coordinated through the neurologist office. And finally, since you specifically mentioned Evrysdi, you can visit their website for additional information at either evrysdi.com or Genentech.com.

[mike-huddleston]

Interesting. I have my own negative experience with Kohls near me. I went in and was moving briskly, but not recklessly, to get from the entrance to the back of the store to drop off an Amazon return. No one anywhere near me, but an older, supposedly mature cashier stopped ringing up a customer , looked directly at me and said really loud, “BE CAREFUL!!” I stopped, looked at her and asked, “If someone was walking quickly, would you feel the need to tell them to be careful?” Response: “No, of course not” with indignation. Me and I’ll edit for the family friendly place this is: “Then you need to shut the ____ up and treat someone in a wheelchair with the same level of respect as you do someone walking.” This obviously and admittedly really triggered me.

I later called and spoke with a store manager who said, “thanks for calling”. I told him that wasn’t good enough and he needed to talk with her and call me back, not dismiss me. He did and he said she denied even saying anything to me and had no interaction whatsoever. I explained (again) what happened and that I wasn’t seeking further disciplinary action, but he should use it as an educational opportunity. I followed up with an e-mail to corporate HQ and spoke with someone there as well as the person who heads up their DEI department. A colossal sham and obviously DEI is for appearances only so they can “check the box”. Ridiculous.

So, I’m not surprised that they wouldn’t design the store to be more accommodating, but also realize floor space is at a premium that I’d imagine they weigh against the number of people potentially inconvenienced. Not sure what the options are, but my expectations are bare minimum in the accessibility area and that way I’m very seldom disappointed. It’s refreshing when you find a business that actually does more than the absolute minimum, and when found, I support them. That said, the bar of expectations is usually pretty low. Progress, but not where we need to be – yet.

Other than wider aisles and perhaps better ergonomics in the check out area (the one near me is a straight line, so not the same), what are your expectations? BTW, we have the same chair and color, although mine lacks all the colorful accessory bags and the awesome JACO arm! 😀

[mike-huddleston]

Something I’m keeping an eye on in addition to the Myostatin inhibitor you reference, is something called anthrobots. These have shown (in the lab, not animals – yet) to allow a certain type of cell (not stem cell) to generate new or regenerate dead motor neurons. This is a fascinating development as far as I’m concerned. The problem with SMA is the loss/death of motor neurons. You are born with the number you will have in your entire life. So, once the die, that’s it for that one. So, all the medication to me, and this is just they way I think about it, like higher doses of Spinraza, won’t really matter as much until something like this is developed. IOW, if you have 100 motor neurons in your arm, and 50 have died from SMA lacking SMN1 and the ineffectiveness of SMN2, even those modified by treatments such as Spinraza and Evrysdi, you still only have 50 to effectively communicate. If anthrobots work as the lab has shown so far, those 50 dead ones could be regenerated or new ones could be developed to replace them, giving you all 100 motor neurons in your arm. Sounds promising.

I also know someone who works for BioGen and although they couldn’t disclose specifics, when we were talking about the above back in March, her response was, “CRISPR gene editing is the thing to watch and may be available before any of those options are.”

So, that we have hundreds, if not thousands of people working every single day to improve our lives is an absolutely wonderful thing and something I am particularly thankful for.

[mike-huddleston]

My PT is very familiar with SMA and has treated over 10 patients, including me. Certainly different approach than a therapist who specializes in rehab/recovery. I am not aware of any therapists who specialize in SMA mental health, but think that, or at the very least, chronic or progressive condition specialties would be helpful.

Kind of related, I was recently talking with someone about my experiences as a young teen dealing with an SMA diagnosis. Kids can often be mean, and adolescence and teenage years can already be challenging enough, but to add something like SMA into the mix and it can be overwhelming. For me, a little bit older now, time has provided perspective. I celebrate the victories and positives rather than the losses and negatives. I mean, we have treatments, and choices with those, just as one simple example. I lost a brother in 2004 when he was at the age of 44 due to complications from SMA. He never had the benefit of treatments, so I try to live in honor of him and appreciate the positives more. I acknowledge the losses, but try to develop a plan on how I will attack them. Muy last PT assessment did not go well for my RULM score. I was devastated, but am now planning on switching to Evrysdi as I may have plateaued on Spinraza. Just got home from my last Spinraza injection at Hopkins earlier today and will start the transition process in the coming weeks.

[mike-huddleston]

Starting this off with an aside: I kind of wish we’d stop doing the hyperbolic article titles, as I feel I’ve wandered down any other SM platform with less ethical practices and standards than we should expect here. That said….

I seriously detest the whole “I’m disabled, so I’m therefore a victim” mindset. I haven’t been to Disney in over 25 years and have no plans of ever going again. I never used the DAS or whatever it may have been called in previous iterations. It seems Disney is faulty in their decision making process for this while trying to actually reduce the number of DAS Passes available. But categorically removing, by default, physical disabilities, whether visible or invisible, wasn’t a very good way of going about this. Hopefully they will respond to the petitions (I signed it) and tweak this process. I think the automatic pass to anyone and everyone who asked was not very effective, so perhaps some adjustments were needed. The implementation of said changes are not a process improvement, and I’d imagine Disney is or will be smart enough to figure this out. There is nothing in their new DAS Pass policy that says you will not qualify, but that you may need to explain why you need this. No one enjoys waiting in line for hours, so that in and by itself is not justification.

I’ll give two examples of why this type of thing is a problem. 1. Last time we were at Disney, I was still ambulatory and walking the park was extremely difficult. I fell 3 times due to fatigue, but kept pushing myself. There was another family of 4 who apparently had taken advantage of Disney’s in force policy at the time. They had a scooter. However, I saw them multiple times in the park that day and every time I saw them, someone different in the family was sitting in the scooter. People like this suck and will still be trying to figure out ways to circumvent the new policy. Since no doctor’s note is required, all they will need to say is “I have ADHD” or “I’m on the spectrum”.

2. Second example, not at Disney. For the 2016 presidential election, I voted in person. I did early voting and was in line and a poll worker came up to me and said, “Sir, you NEED to come to the front of the line.” I said, “I’m good.” He insisted and I continued to decline, so he went and got his supervisor, who also insisted. I said, “If you ask every single person in front of me if it’s okay for me to move in front of them and they ALL agree, I’ll go to the front of the line. In my wheelchair, I’m probably more comfortable than everyone standing here.”

Point being, there is no right answer. Disney is trying to find a way to make it better for the people who need the DAS Pass. Hopefully, they’ll figure it out. In the meantime, I’m not going to let anyone, here or elsewhere, make me feel like a victim. And that doesn’t mean we don’t need accommodations or help from time to time, but let me determine when that’s right for me.

[mike-huddleston]

This is a tough one, Alyssa. I’m much older, so my 4 nieces now range from 19 to mid 30s. My 8 nephews now range from about 20 to early 40s. When they were in the range you’re asking about, I was still ambulatory and able to be more involved. I was no longer able to run, but could stand and throw a frisbee or play catch with baseball/glove or lacrosse sticks. I’ve been in the chair since 2015, so most of them were already older by this time. As they’ve gotten older, we go to baseball games and dinner, etc., but that type of activity may not serve an under 7 year old very well.

So, my suggestion would be to think through things you can do, even if those stretch you slightly – slightly – out of your comfort zone while still being safe for you. Like, are you comfortable going to the movies? If so, maybe go to a movie with one or both of them. Do they like to play sports of any kind? If so, maybe watching them play games or practice and encouraging them might work. I think seeing you in different settings will be helpful to them and to you.

Please let us know how your relationship with them progresses.

[mike-huddleston]

My neuro at Hopkins prescribes Mestinon (Pyridostigmine) for me. Has to be taken with meals, so caution if GI issues. I take 1 60 mg tablet with breakfast, and then split one in half for lunch and dinner. This allows the muscles to contract longer before fatiguing. Does it work for me? I’d have to say yes. On a recumbent stepper (NuStep) used at PT for a 10 minute warmup, I went from level 1 to level 6 (out of a total of 10) and my reps per minute were more stable toward the end of the 10 minutes than before I started taking it. IOW, as an example, before taking it, I was not able to increase level of resistance and would average 75 steps per minute for the first 5 minutes than about 60 steps per minute for the last 5 minutes. After taking, increased resistance and average of 75 steps per minute the first 5 minutes and close to 70 steps per minute for the last 5. Similar consistency at each increased level of resistance.

Last week, I also just started taking nitric oxide supplements (OTC, not prescription). An ambulatory type 3 mentioned it to me. Basically, it increases blood flow as it’s a vasodilator. Highly recommend discussing with doc before taking this as there are potential side effects. I’m taking less (one) than the suggested amount (three), and will see if I notice any benefit.

Of note, I exercise a LOT. Weekly clinic and aqua PT sessions, and about 2 hours per day in my home exercise program – even on PT days.

[mike-huddleston]

Sorry, maybe it’s where I live, but I don’t get this impression at all. And I’m not a fan of trying to make myself a victim. Access is not going backwards just because businesses that had to make accommodations for EVERYONE to even stay in business during COVID, like curbside delivery, eliminated those options. It sounds like you may not have a lot of options, and I understand the frustration with that. but I sincerely find this whole topic and some of the responses difficult to process. Try calling the business or better, going by when convenient for you and actually talk with the owner or manager. Explain your situation and see if some kind of compromise is an option. You say they don’t do takeout on the weekends, is a weekday a possibility. Staffing someone, or several people, to handle takeout on their busiest days may not be feasible for them. It’s hard for people to hire and retain in the service industry, so maybe this was a decision they made to remain viable.

There is the ADA and the subsequent updates that have made things considerably better for all of us. That was preceded by the Architectural Barriers Act in 1968. Is it perfect? Nope, but that’s why revisions happen.

Stop being a victim. Don’t allow others to make you one either. Be your own best advocate as it benefits you and others. And just because changes made during a once in a century or lifetime pandemic are not persisted, it certainly doesn’t mean things are going backward.

[mike-huddleston]

Hey Alyssa –

To me, it boils down to making sure the doctor doesn’t look at you as an SMA patient disguised in a human body, but rather a person living with SMA (among many other things). Just like interactions with folks who don’t, won’t, or can’t see beyond our condition, especially if you’re using a wheelchair, it’s the lazy view or discomfort that results in such a definition. It’s up to us to help them overcome that.

I had a PCP that had nothing to do with my SMA related care. I should preface this by stating I NEVER went to the doctor unless it was absolutely necessary. But, he was my wife’s PCP so after we married, she encouraged me to start going annually. I gave him the usual rundown, but also note that I was ambulatory at the time and not even using a cane or other assistive device. But obviously, my SMA was progressing (more labored walking, difficulty getting out of chairs, etc.). For my annual visit, the diagnosis code every time for over 15 years was, “Spinal Muscular Atrophy”. I dismissed this as either ignorance or just a need for insurance billing purposes. He had another doctor in the office I saw once for the flu or similar issue and I saw him as I was leaving. He said, “Hey Mike, how are the muscles? Still getting weaker?” I was astonished, angry, and so disappointed. I said, “Gee, doc, after being my PCP for almost 20 years, I would have thought you’d have pulled the PDR just once or Googled SMA. That’s kind of how this condition works. How can you not know that? I will never be back.”

I found another PCP and have been seeing him since 2015 when I started using a power chair. That means I went over 10 years without a PCP. The experience has been much better, but I took the time to lay out basic SMA related info on my first visit and he’s actively engaged and treats me like a person.

And I know we’re discussing PCPs, but just to show it’s not all been negative, while I was still ambulatory, I tried acupuncture with a traditionally trained acupuncturist. She and her husband had moved here from China and were both medical doctors. At the time (not sure if it’s different now) the US had requirements of several additional years of medical training to practice here in the States, but they had started a family, so they opened an acupuncture clinic (it was part of their medical training in China). Between my first and second appointment, she had done a ton of research, reached out to several former colleagues in China about SMA, and developed a comprehensive treatment plan for me. What a great experience!

[mike-huddleston]

First of all, congratulations on getting close to be able to obtain treatment! That’s exciting. That we have a choice is also amazing!

I’ve been treated with Spinraza since May of 2018 and mostly have had positive experiences and results. However, I do seem to have plateaued and have considered switching to Evrysdi. I have a PT assessment in early April and if I’ve declined as I suspect I have especially in the arms/shoulders, I have little to lose by switching and trying. Also of note, it is now much easier to switch between the two treatments than previously, so trying the alternative isn’t as horrible of an experience as it used to be.

For Everysdi, the primary side effect I’ve heard about and echoing the comments of those here who use it, it’s the potential GI issues.

For Spinraza, you do 4 loading doses in the first 8 weeks (0, 2, 4, and 8 weeks), then every 4 months for maintenance. Some folks have stated they feel much more energetic immediately after the injection, and more lethargic the last month or so before the next one. I have been moderately stable in the way I feel throughout the 4 month intervals. Another factor you might want to consider is the method, as Spinraza is administered with a lumbar puncture. That may cause pain or discomfort, and if it leaks, it may require a follow-up blood patch. This is rare. Also, for me, the lumbar puncture requires me to lay flat for nearly 2 hours after the injection to reduce the possibility of a headache. The one time I didn’t adhere to this, I had a headache for 6 days. YAMMV. The facility you have the injection done may use live fluoroscopy or may just rely in the anesthesiologist to guide the needle. You may want to know that going in if that’s a concern for you.

And finally, since you asked, there is not a single thing that any doctor can point to and say definitively one will work better for you than the other. Some people respond better to Spinraza, some better to Evrysdi, and some who have switched have said they felt no noticeable difference. So, it’s going to boil down to your preference. That said, the ability of Evrysdi to distribute throughout your body as it’s oral and goes through the bloodstream is viewed by some as a better distribution mechanism. In autopsies, the only time when this can currently be determined, the highest concentration of Spinraza is near the injection site.

From a cost perspective, it’s likely best top discuss with each company. Spinraza is typically considered a medical procedure and covered as such if you have insurance. Evrysdi is often considered a prescription drug, and thus often covered by your prescription coverage rather than medical. Also, BioGen seems to have a much better co-pay assistance program if Spinraza is not covered 100%. In discussions with Genetech reps, I don’t have a warm and fuzzy about whatever may not be covered for Evrysdi.

Best wishes in your treatment journey. I took the time to write all of this because it’s not a simple answer.

[mike-huddleston]

@susana-m Thanks for your message. I really liked acupuncture and how I felt. She applied a TENS unit to some of the needles for additional stimulation, which seemed to help. Unfortunately, they moved out of the area and I have not resumed this treatment, but your message resonated and has given me the nudge I needed to search for another traditionally trained acupuncturist. Thank you!

Yes, that kind of experience can make so much of a difference. I am fortunate in finding a PT about 10 miles from me that has a lot of experience with treating patients with NMDs, but specifically SMA; she’s worked with about 10 SMA patients between here in Maryland and previously in Ohio. I’ve been working with her since 2016 and see her for one clinic and one pool session each week.

[mike-huddleston]

Nothing new specifically, so I just keep an eye on research online and something seems to pop up from time to time. I was just excited when my friend at BioGen implied that this research is progressing well and may be available before the other products like Scholar Rock’s myostatin inhibitor. My question to her specifically was about the concern with loss of motor neurons and she said she believes CRISPR will help with that as well. Short of that, anthrobots look really promising for that.

[mike-huddleston]

Yea, I won’t shop at Kohls and give them my money. But, hey, if I have an Amazon return, they are definitely the closest option for that. In all fairness, I live in an area where I am fortunate to have many options.

As far as this part of your reply: “As long as minimum requirements are met the rest doesn’t seem to matter. When spaces are accessible for me they’re also accessible for parents with strollers or folks with walkers as well as a multitude of people.” I couldn’t agree more. I was just trying to understand what you were referring to since accessibility can mean different things to different people. Thanks for clarifying.

And about this: “I would love to see results from a study comparing revenue for a space that’s open as opposed to packed and cramped”. This is a tough one. I remember doing case studies in some marketing class in college where they discussed the layout of grocery stores based on human psychology and they actually have areas of expertise on space utilization. I wouldn’t be surprised if they have similar for retail stores, like Kohls. Not defending the practice, but it seems likely to me. I don’t know, but it could somehow be related to the Wal Mart Effect with stores trying to jam all things into smaller spaces in an attempt to be all things to all shoppers. “If we just jam in 10 more things on this aisle and do so by making the aisle 3 inches narrower, we will achieve our objective” or some other nonsense type thinking.

[mike-huddleston]

I hear you, Val. I won’t even consider flying for this very reason. Improvements are supposedly coming, but the current position of the airlines treating my chair like luggage and barely being willing to pay for any damage does not offset that I’m hugely inconvenienced, if not having the entire trip ruined, if they break my chair.

I mean, if I can get on a train, subway, light rail, bus, etc., and be able to stay in my chair, I know there are weight issues that make it a little more sensitive for airlines, but this is certainly something they should be able to accommodate.

[mike-huddleston]

Thanks for these comments, Aimee. Glad to hear that the current Disney experience and their treatment of those in our community was mostly positive. They’ll get this DAS pass figured out and hopefully it will be a better overall experience.

[mike-huddleston]

Hey Deann –

My comment about the titles is within this community of readers here on SMA News Today, we don’t need catchy titles to generate readers or dialogue. I just don’t think it’s necessary and seems to be pervasive at SM sites vying for attention. You already have us here and we are all passionate about SMA and things that affect us.

As far as the victimization or victim mindset, to me, it’s not sitting around and doing nothing, because you’re obviously active, engaged, and doing something, raising awareness and writing thought provoking articles, and I appreciate that. But to me, there seems to be a theme or mindset in general of people seeking opportunities to be victims of some act. I’m referencing the disability community here because of this site, but I also find that in the population in general. And even then, it’s not that people are doing nothing, but coming across as a victim or the target of some action/inaction. Even your comment of a “slippery slope as services are being taken away” hints at that. The video you linked in the article was fine, but she came across in several parts of that video as shedding crocodile tears. Perhaps that was some of my comment.

A few weeks ago, there was another article about a service being taken away and at the very least implying it was targeting the disability community. I think you wrote that one as well, “Are we going backward when it comes to access”. I just fundamentally do not agree with that because I don’t think every decision that affects us was a deliberate attack on our community. A restaurant removing curbside service that only offered it to keep some business during COVID is taking away a service that was in place for EVERYONE, not just this community. Sure, raise your voice and see if a compromise can be agreed upon, but that doesn’t mean it was an afront to the disability community. There is no reality to me where this implies access is going backward.

That said, I am a strong advocate for our community. Significant progress has been made – no doubt – but MORE is definitely needed. I will be the voice for those without one or needs theirs amplified. I will be your strongest supporter and ally, but when people who are not the target of some action inappropriately place themselves in the victim crosshairs, I take exception to that. Someone wants to remove curb cutouts, take out access to buildings, remove elevators, add obstacles, I’ll cut them off at the knees – with vengeance. Making something a little less convenient for everyone, not just those in our community, does not mean we are the target of their actions.

Disney felt some changes were needed. They will figure this out.

I hope this provides a little more context to where I was coming from?

[mike-huddleston]

Hey Matt –

Very interesting and I appreciate you posting that. Do you mind if I ask if you are also being treated with either Evrysdi or Spinraza and if so, any difference in combo with it?

[mike-huddleston]

Hey Lisa – definitely worth a shot. I know two other type 3s, both ambulatory (I’m not since 2015) who tried it as well. One remains on it the other didn’t. As far as the side effect, it’s to be taken with meals. When I do that, I haven’t had any issues. And without re-reading what I wrote above, apologies if this is repeated info. The Rx calls for 60 mg and it comes in tablets, each being one dose. When I ramped up with it, I cut each in half and took a half with breakfast for a few days to see how it went. Then increased to 1/2 at breakfast and lunch for a few days, then added a 1/2 at dinner for a while. I now take one whole one at breakfast and a 1/2 at lunch and dinner. So, ramping up helped for me and something to keep in mind. That will also tell you when you may cross into the side effect area.

I hope you find it helpful, but please keep us in the loop on any progress.

[mike-huddleston]

Interesting study. Thanks for sending Lisa. I read it quickly, but it would be good if repeated in conjunction with treatment (I started Spinraza in mid-2018, before starting Mestinon). And reported outcomes are hard to measure (“How do you feel?”) and more susceptible to the placebo effect. They should also break down the results better between type 2s and 3s as well as copies of SMN2, all potentially meaningful to how one responds to treatment of any kind. I’m a 3 with 4 copies of SMN2.

My experience was documented and displayed at the 2021 CureSMA Conference as we had weekly hard, documented, measured data over a nearly 2 year period. So, my baseline measures were established while already being treated with Spinraza, so the biggest gains for me were with Mestinon. IOW, I was measuring results on the NuStep for nearly 2 years before starting Spinraza, and then being treated with Spinraza at least 1 1/2 years before starting Mestinon. There was a slight and consistent uptick in resistance levels and steps per minute with Spinraza, but a much sharper increase in both measures after starting Mestinon.

[mike-huddleston]

Thanks Tracy. I value and appreciate your response, thoughts, and perspective.

That said, I think I have a fundamental disagreement with framing it as “going backward”. As mentioned in my response to Eric, not moving forward as fast or as much as we’d like is not the same thing as moving backward. Framing the removal of necessary conveniences that were implemented for everyone, not just those in the compromised or disabled community during the pandemic as moving backward and an afront to the disabled community, is in fact making oneself a victim. I simply don’t agree with that and refuse to be a victim or allow others to place me in that category. When we do that, it reinforces the stereotype or bias people have with those of us within our community. It’s my opinion, and I hope you respect that as much as I respect yours.

One main thing that makes this difficult is the umbrella that we are under in our community. I was the chair for the employee resource group for employees with disabilities at the company I retired from at the end of 2022. There were over 42,000 employees. One thing unique in our community that was not evident on other ERGs is the broad range of disabilities. We have mobility related concerns, as well as vision, hearing, mental, neurodiversity, etc. There is simply no one size fits all approach to our community. From a business perspective, that can be overwhelming when trying to accommodate everyone. The ADA is nowhere near perfect, but it lays a solid foundation. Companies that meet the bare minimum requirements present a whole slew of issues for those of us with accessibility difficulties.

Related to this is the whole “anti woke” nonsense. Woke was always intended to be a raising of awareness of other’s circumstances, history, or current challenges, and to develop an understanding and potentially increase empathy. However, it has been co-opted and turned into a pejorative, which means anyone in ANY of the diversity groups, including the disability community, are lumped together. I still don’t think that means moving backward. I still won’t allow myself to be viewed as “less” or a victim.

And it’s unfair to imply that I’m saying that we should just accept accessibility issues. I don’t mean that and if I implied it, that certainly was not the intention. Raise issues and concerns…I clearly suggested directly communicating with the business, preferably in person if that is possible. Again, kind of what Eric was describing in his response to me. If a new business is not accessible, that concern can and should be raised.

TO ME: Going backward would be no medical/pharmaceutical companies pursuing treatments. It would mean eliminating building access. It would mean removing curb cut outs. It would mean accessibility was being removed rather than improved. It would mean airlines weren’t actively considering modifying their policies and accommodations for travelers within our community. These are not my experiences and observations, but it doesn’t mean things can’t be better. We should push forward, not give up. Does that mean everyone or every company is in compliance? Certainly not. Does it mean we’re better off than we were? Absolutely yes.

[mike-huddleston]

Thanks for your response and clarification, Eric. I think my issue is framing it as going backwards. Perhaps, and my opinion, perhaps we aren’t moving forward as quickly as we’d like, but that doesn’t mean we’re moving backward. Yes, by all means, point out issues with accessibility, and raising awareness is a part of that. I personally have not experienced things moving backward. That doesn’t mean things are perfect or where they should be.

[mike-huddleston]

Please explain what you mean by, “disability access is being repackaged as optional special access”? I have no idea what this means and would like to understand. And only part of the reason masks were required were to protect the elderly and those with compromised immune systems. If that was viewed as protecting everyone with a disability, well, there’s no cure for stupid. That was quickly determined to not be a very effective mechanism to stop the spread, but rather protected the wearer more than anything else. Again, a pandemic where no roadmap existed, so caution, perhaps sometimes taken too far, was taken. Malls going away are just the way things have been trending over the last 20 years or so. It has absolutely nothing to do with taking away an accessible space for the disability community. Again, being a victim is not a pretty way to go through life.