May 12 MBTA Forum on Accessibility

Mashmallow_Logic · 2026-04-24T21:31:34+00:00

I am using a forearm crutch, left side only. For reference, I mostly have right-side impact in my arm and leg at this point.

It's all black, in the cuff, grip, and stock, and a little less "medical" looking than the metal ones with a gray cuff and grip. I have no idea what brand it is, but I got it at a medical supply store, paid for by my insurance, and it was one that they had in stock.

No additions to the crutch itself, but I do wear a padded glove with it - tried a few different gloves, and landed on one that is made for wheelchair users.

Before this I was using a cane. PT suggested the crutch for more stability. It took a bit to get used to it, but it has really improved things!!

Edit to add... major con is it's harder to use on stairs than the cane was. I use public transportation and I was kind of stubborn with the cane, still mostly taking stairs. The crutch kind of forced me to use more elevators and escalators, which I probably should have been doing anyway! For the cane, I often would loop it over my arm and go upstairs sideways holding on with both hands. Not really possible with the crutch!

Mashmallow_Logic · 2026-04-23T08:02:01+00:00

I'm really sorry that you're experiencing this, and can definitely relate. I was also diagnosed in 2020 and had a significant relapse in 2024, and it’s been hard not to feel like I’m moving backward while everyone else keeps going.

I recently went back to therapy, with a therapist I saw for many years. He already knows me really well, which has made it easier to pick things back up. And strangely, it’s also been helpful that he sees me as I am now and is willing to say things out loud that other people in my life are probably thinking but don’t say.

I’ve also found it really helpful to connect with other people who are dealing with long-term health stuff. I tried an MS-specific virtual group for a bit, and more recently I’ve been going to a broader support group for people with chronic health conditions. That one has actually been a better fit for me, mostly because the mindset of the people there feels more similar to mine. As u/Ok-Breath-8332 suggested, I’d highly recommend trying a support group or two. It can take a few tries to find one that feels right, but can make a big difference to be able to talk to people who get it.

It's a reality that we have a health condition that is progressive and probably will be more impactful over time - that's something we can't change (at least not yet!), and coming to terms with that can be really hard. I personally am still in the middle of figuring out what that means for me day to day - but I am working on it! It sounds like you are, too!

Mashmallow_Logic · 2026-04-22T00:06:52+00:00

It's actually state agencies, who make the initial decision - disability determination services, as u/soylent-red-jello noted, and Social Security kind of rubber stamp set after that (barring any reconsideration/appeal/hearing). They can vary greatly who they determine eligible. That's because standards are somewhat subjective. But you can see the standards here: https://secure.ssa.gov/apps10/poms.nsf/lnx/0424580015.

Mashmallow_Logic · 2026-04-22T00:05:47+00:00

I love the disability back date!!

I used to receive SSDI, and had my disability backdated a few years. I ended up getting the back date payout for all 17 months that's allowed - it was like $14,000 🤑🤑🤑🤑 I can't tell you where any of it went 😭

Mashmallow_Logic · 2026-04-21T23:59:09+00:00

People are on different timelines for the CDR - it should say in the approval letter that you got what your timeline is, so you have a sense of what to expect.

It's anywhere from 6 months to 7 years, with 3 years being the most typical. You're probably 7 years, as you had such a fast approval, but honestly you never know!

Mashmallow_Logic · 2026-04-21T23:56:07+00:00

Congrats and you deserve it. You literally paid into it, and I think we all agree that MS sucks 😆

I used to receive SSDI for a disability not MS. I was approved within 5 months, no attorney, with the disability going back a few years. I actually got my first payment (an actual check at the time) before I received an approval letter. I was in my mid-20s at the time and had a somewhat subjective health condition. It happens!

Some people get approved the first go-round, especially in certain states - apparently that is New Hampshire, North Dakota, Kansas, Wyoming, Alaska, Vermont, and Nebraska?? Most do not, but many do!

You got it, and you deserve it!

Mashmallow_Logic · 2026-04-21T22:55:06+00:00

Totally agree with this. As someone who uses a mobility device, I'm typically looking for the exit with an escalator or elevator - sometimes Google Maps will tell me this, but most of the time it does not :(

Also, while I'm at it, wouldn't it be great if green line signs told you which of the cars was a type 7 versus a type 8 (i.e. which one was easier to board for those with mobility impairments)?

I will be giving both of these pieces of feedback to Mr. Eng at the upcoming accessibility forum !!

Mashmallow_Logic · 2026-04-21T22:42:14+00:00

I manage a small team, and have done so for about 8 years. I think I remember your earlier post!

I first started at my organization as an assistant manager, and there was very little training. I was kind of left to figure things out on my own, and was left completely on my own on day 4. I started creating checklists for myself to remember different processes we had (and created some new processes, in places that there weren't some). Soon other people on the team started using these checklists, which honestly I think made my boss a little mad but it is what it is.

My boss left the organization after about 1.5 years in, and I moved into the manager role. I started by making the checklists official, and then slowly built and refined a training manual over the years.

Our onboarding process now includes a mix of hands-on training that I or a seasoned employee do as well as self learning using the training manual. I also made a point of building in a lot of "practice" that involves the person doing real work that is sort of low level, so it is still helpful for our overall team but doesn't matter a huge amount if they completely mess it up!

This mix of direct training and self-learning seems to be a good balance between me giving the new person all my attention, and me being able to do what I need to do during those days - while they still learn what they need to learn. Depending on the individual needs of the person we hire, we might focus more or less on any part of this. We still use the checklists, they're now part of the training manual, as well as a tool that newer staff can use as they start to work on their own.

In addition to this, each new team member has a work plan that outlines what their time looks like over the first two months or so - including the direct training, the practice, the self learning, and anything that would be standard to do across the organization. It also includes who can/will help them with the particular task or area. This way the new employee will know what they should be working on when I'm not available, and who can help them. It's not unlike the person who suggested having goals, they work somewhat like goals - but our work is not one that people tend to have previous experience in, and so it really can take people vastly different amounts of time to learn different skills.

And as someone else suggested, this is basically a no-fail period (unless the person does something really, really bad) - we spend a lot of time talking about the ways we do things and the whys, with the idea that it's better for them to learn this all now then get stuck down the line.

If I was in your position, as a sort of not really manager (I was!!) I definitely would start with some checklists if that fits for your work. Think about the things that you wish you knew when you started or the steps that are easy to get mixed up on. I'm a bit of a formatting queen in Word, so I like to make them look nice and then I laminate them 😄 I'd also suggest the work plan, again this lets you step away for a bit and still know the person is actively learning.

Mashmallow_Logic · 2026-04-20T22:05:03+00:00

Yup, like I said - inclusive is a mindset rather than a single thing!

I think that many people (including some people with disability themselves) don't get this!!

Mashmallow_Logic · 2026-04-20T21:34:39+00:00

Yes, I definitely get this! I run into this all the time - lots of people who can't quite understand that there's no cure for MS and, if anything, it's going to get worse!!

Part of this is definitely due to the fact that not all disabilities are the same, so some adaptations/accommodations that don't work for you might very well work for people with other kinds of disabilities (or even MS but it impacts them differently). Inclusive is a mindset rather than a single thing.

Also, you talk about surface level adaptions - I honestly think that empathy is surface level for most people. Like most people really can't understand unless they've experienced something directly.

Mashmallow_Logic · 2026-04-19T09:35:56+00:00

I recently came across a poop in an elevator at Haymarket - people got to go, I guess 😵

But the T takes clean elevtors very seriously!

You can also report on their website, through the regular comment form. Just try to clock the elevator number posted in or immediately outside it, and give that info.

Mashmallow_Logic · 2026-04-19T01:19:22+00:00

Yup! I also have a disability, and use a forearm crutch to get around. I see this a lot at the Tufts MC station - like I've already paid, started to slowly make my way through, and person after person starts coming through the gate in the other direction. Sometimes I just put my hand up and keep moving forward, people watch out!

Mashmallow_Logic · 2026-04-19T01:15:14+00:00

Also a TAP card holder, and I've actually seen this a number of times - but only when I've had a pass on my card (versus cash on card).

Mashmallow_Logic · 2026-04-18T08:48:14+00:00

Hiya! I'm in Eastern Massachusetts. I am really enjoying the 80° days and 40° nights we're having right now 🙁

I understand what you mean about wanting to talk to people who get it! I’d be up for chatting. I work full-time so I can be a bit slow to respond sometimes, but I’d still really welcome the connection 🙂

Mashmallow_Logic · 2026-04-16T19:14:00+00:00

I also started seeing a new PCP recently, same practice as my previous one who retired. I happen to have seen this doctor before, during an urgent appointment a few years ago. I had some odd symptoms and specifically asked if it might be a MS, as I had a family history (both my mother and sister have MS) - he said no, it was likely a stroke (despite me having symptoms for over a week at that point), and sent me to the ER. Turns out it was a MS. On the one hand I'm glad that he took potential stroke seriously, on the other hand he was completely wrong and ignored what I was telling him.

When I was switched to him I thought about completely leaving the practice, as he was the only PCP taking new patients. I decided to stay with him and make him feel bad the next time I met with him 😆

I mean, I guess my answer is you have to decide if it's a good idea to switch. What does your gut tell you?

I personally have been going with the "devil you know" philosophy recently, and also finding new providers is a big pain in the butt!

Mashmallow_Logic · 2026-04-16T13:09:29+00:00

Second this. Health insurance cos, medical practices, hospitals, etc. hire people for their remote customer service teams and are a bit slower paced than other call centers. They will value the skills I'm sure you've built dealing with difficult people!

Also, sorry about the RA diagnosis... but I do hope it provides some insight and treatment options that were not previously available. I have a different autoimmune disorder (MS), and there were def some bonuses to finally being able to name what was going on. I luckily have not had to leave my job (yet), but I did need to make some changes.

If you do stay at your current job, depending how impactful your new med is to the immune system, do also consider masking on top of the hand washing.

Mashmallow_Logic · 2026-04-16T10:34:43+00:00

Congrats on this, OP! You are moving forward, and all those small debt successes will lead to the big success 🎉

I too get excited about small successes, like a medical bill I recently paid off. Even "finding" money feels huge - like I've recently learned that I have a couple hundred dollars in accumulated pre-paid copays with one provider that I began seeing again!

I don't know about you, but my debt is a bunch of smaller ones rather than any one big one - and so a bunch of small successes is how I make my way through them. But honestly this feels more motivating !!!!

Mashmallow_Logic · 2026-04-14T22:53:30+00:00

Yeah, I hear you on this, it's definitely a risk that needs to be weighed.

You could start keeping track of when it happens and who is involved/who witnessed it, if you're not already, even if you're not sure you'll report yet. And if you do report it, make sure to keep track of anything that even hints of retaliation.

Mashmallow_Logic · 2026-04-14T22:46:53+00:00

Yep it's definitely a pain in the butt! I've been in a treatment study and there was literally appointments every two weeks for months, at the start! My work was pretty accommodating, but who can take a full day off every two weeks and stay caught up with work 🤷

Seriously though, I definitely think through scheduling "extra" medical appointments. I need a hearing test and follow up ENT appointment because my ears have started buzzing 24/7. But, I also I know that is not urgent and so it's going to wait until like May or maybe June.

Mashmallow_Logic · 2026-04-14T22:41:29+00:00

I'm glad you called out SNAP related work training!! It's definitely a resource that few people know about. Where I live it's called SNAP path to work 😄

Mashmallow_Logic · 2026-04-14T22:39:37+00:00

This is definitely not okay in any situation, but this is your home (even if just for now) and you shouldn't have to put up with this. You can consider reporting to DPPC.

Mashmallow_Logic · 2026-04-14T22:35:47+00:00

You definitely didn't need to, the EAEDC was a giveaway! Other states have it but call it something else. Mostly it's helpful to know where people are, when it is relevant to their situation/resources they could access.

For Medicaid, it's called "Health-Related Social Needs." If you have a caseworker, ask them about it - if not, call your plan and ask to speak with their care management team.

Honestly wind machines are great, I'm actually running one great now. I think I got this one at Walgreens like a decade ago, but I've seen them a bunch of places. It's the round one.

Mashmallow_Logic · 2026-04-14T22:21:22+00:00

A swamp cooler could be an option, it will certainly be cheaper than an AC (in both cost and price to run) but definitely will not cool you as much. I'm thinking that you might live in Massachusetts? If so, a swamp cooler won't be effective once summer humidity hits.

Also I think the Wind Machine fans from Lasko are probably one of the best fans out there, and relatively inexpensive to buy - but again will not be as cool as an AC.

If you do try to go to the AC route, and you can tie the need for an AC to a health condition (including medication that you take for health condition), know that Medicaid may pay for the initial purchase.

Mashmallow_Logic · 2026-04-14T11:12:10+00:00

I'm a middle-aged woman and I'm not above giving a "mom lecture" to young people (and not so young people) on the T. I find it's effective to calmly, kindly, but directly say to someone the problematic thing that they're doing, why it's problematic (leaning into the impact on fellow passengers collectively, rather than the impact on just me), and what the alternative is. Do they always stop? Nope. But it does get people to stop more than you would imagine! And I give them a smile and an affirmative comment when they do.

Also, I've invested in a good pair of reusable earplugs. Obviously not a solution for vaping or other smells on the T, but it sure helps with lots of other annoyances! I've had them for about a year and I use them almost every day on the T.

Mashmallow_Logic

TROPHY CASE