2026-09-18 - Commission on Disability Issues

00:00Do we do I'm trying to set the live

00:03stream up right now.

00:05>> We have Yeah, five is

00:07>> okay.

00:07>> We're good to go.

00:10>> We're good to go.

00:12>> Every person counts.

00:14>> Yeah,

00:17>> we are. Okay, we're okay.

00:19>> Good afternoon. I'd like to call to

00:21order today's mayor's commission on

00:24disability issues.

00:29First off, we have the opportunity for

00:30public comments. I don't see here any

00:34public comments on there. No.

00:37All right. The minutes of last August

00:38meetings are still in production. We had

00:43a few technical issues there.

00:47Next up on the agenda is to discuss the

00:51>> journal article.

00:55>> Oh, I'm sorry.

00:57We have to vote to defer the

00:59>> Yes.

00:59>> Oh, yes. Sorry. We have to vote to defer

01:03the minutes. Take a motion to defer the

01:06minutes.

01:07>> I make a motion to defer the minutes to

01:09the next meeting.

01:10>> I'll second.

01:11>> All in favor say I.

01:13>> I.

01:13>> All oppose say nay.

01:16All right. So,

01:17>> should we amend the agenda, too?

01:20>> No, not for the minutes, but for Michael

01:22Brohan's report. Well, Michael's here,

01:26but it's not. I didn't

01:27>> Oh, I thought we added them.

01:29>> No, we couldn't do it because I had

01:31already published them.

01:32>> All right. We also need to add to the

01:35agenda Michael's um

01:40comments and discussion on our

01:44uh project of rolling up and down King

01:47Street.

01:50to [clears throat] add that to the

01:52minutes or to the agenda. I need a

01:54motion.

01:55>> I'll make a motion that we

01:58>> What is it we're doing?

01:59>> Amen agenda to include Michael's report.

02:02Okay. Add to the agenda to include

02:03Michael's report.

02:05>> I second the motion.

02:06>> Okay. And I think doesn't that require a

02:08uni does that require a unanimous vote?

02:11>> That requires a unanimous vote. So we'll

02:14do a roll call vote. I vote I.

02:18Alex Jackson I

02:19>> I

02:21>> I

02:23said I

02:26>> did everybody say I

02:28>> did not.

02:30>> I think Maria needs to say I

02:34>> raise your hand. [laughter]

02:39>> Maria say I

02:42>> or nay.

02:43>> She's red.

02:46I heard her a second ago. I did, too.

02:51>> All right. We'll give her a minute.

02:52We'll ask her again.

02:53>> Okay.

02:55>> All right. The next thing we have is

02:59the disability perspective kicking it

03:03with Kimberly

03:04that we asked everybody to read

03:08and we wanted to discuss it. Um,

03:13it's I'll start it off. It's kind of a

03:16controversial

03:17discussion as she said in the beginning.

03:22Um,

03:24and I understand why it's controversial.

03:26So, what's everybody's thoughts and

03:28comments on it?

03:33I've been receiving a whole lot of of um

03:37communication, some mostly emails from

03:40the disability community because they're

03:42very frightened that the current

03:45administration is going to put people

03:47into institutions instead of paying for

03:50home care. And this seems to be

03:53effective more with people with

03:56intellectual disabilities than people

03:58with mobility disabilities. At least

04:01that's the population I'm hearing from

04:03the most. But I think that's

04:06I think personally that that's awful to

04:09go backwards and put people into

04:12institutions. And Kimberly

04:17um broaches the subject politely, but

04:20she also talks about people with

04:24disabilities carving their own paths

04:26rather than

04:28than being told what to do.

04:34>> I'm sorry. Does anybody know who the 507

04:37number is? Anybody

04:42know who the 507 phone number is?

04:56>> Any other thoughts?

04:57>> Amy, it's Amy probably.

04:58>> Okay.

05:03>> Was it 8410297?

05:06Yes. Okay. It's Amy.

05:14All right. Who else has thoughts on

05:16this? Uh, kicking it with Kimberly.

05:20>> I'm just kind of questioning it. I She

05:22says across the country. Do we have

05:25specific examples of this is happening?

05:28I'm just trying to find some context on

05:31on this before I get outraged or one way

05:34or the other.

05:35>> Fair enough.

05:37What kind of context?

05:39Tell me again what kind of context.

05:43>> She says across the country more

05:45communities are being developed

05:47specifically for disabled people.

05:49>> They may be called disability villages

05:52intern or intentional communities

05:55housing complexes or safe communities.

05:58But she doesn't actually

06:00give any concrete examples of these

06:03happening

06:05or is this Is this all hearsay or

06:10I'm just trying to like I want to do my

06:12due diligence and and read about these

06:16communities.

06:17>> Kind of what I thought about that,

06:19Michael, when I read it was the um

06:24the age agent communities, the the ones

06:28that require 55 and older.

06:32>> Oh, I think here's an example. She said,

06:34"We work closely with SOS Care in the

06:36Myrtle Beach area. It offers apartments

06:39but not as closed off village as

06:41segregated campus.

06:43People can come and go freely, I would

06:46hope."

06:47Interesting.

06:48>> The community in the Myrtle Beach area

06:50was put together by parents of people

06:53with intellectual disabilities.

06:56They wanted them to be in community but

07:02not on their own basically. So they they

07:04provide housing, they also provide

07:07accounting help. There's some

07:10involvement on occasion with employment

07:12support

07:14and a few other things like that. It's

07:16just the parents don't want to die and

07:20leave disabled

07:23offspring unprepared for them to die.

07:27And some of the disability boards do

07:29something similar and what's typically

07:32called a group home.

07:36As long as there's some autonomy to it,

07:41I don't have as much trouble as I do if

07:43there's no autonomy. But the state of

07:45South Carolina had the coastal coastal

07:50>> coastal

07:50>> coastal center. Yeah. And then they have

07:52one in the middle of the state and one

07:55in

07:57the north end of the state. And

07:59interestingly, an aside is that the

08:01north end of the state, the houses were

08:03built on

08:05land that was so damaged by chemicals

08:09that you couldn't build normal houses on

08:11it. But they let them build group homes

08:14for people with disabilities,

08:16which I found problematic at best. Um,

08:21so

08:23there are different sources, Michael.

08:25Some are parents based, some are

08:27community- based,

08:30but it's in I I think that the federal

08:34government push at the moment is to stop

08:36supporting the community-based ones and

08:39to

08:41allow people who are in the community-

08:42based ones to go somewhere else. I'm not

08:46sure where they have in mind.

08:50Does that make sense?

08:54>> Yes.

08:58>> So, Kimberly is saying that we need to

09:00make our own choices and if we choose to

09:04be in community- based

09:07arrangements such as the one in Myrtle

09:09Beach, which everybody thinks is such a

09:12great idea. Um,

09:15I don't think so. But that's probably a

09:18very personal opinion.

09:20>> I think like I said dep it would depend

09:22on the disability

09:23>> and it would depend on Yes. It sounds in

09:27some cases expensive.

09:30>> Yeah.

09:39>> Any other thoughts on it?

09:48It doesn't it doesn't sound super

09:51>> inclusive

09:53um to have a a separate

09:57place for folks to live. Um,

10:01I mean, I don't know. They they don't

10:04seem to be really pushing uh

10:08um

10:10the right end goal. I feel

10:14that disability is part of everything

10:17and part of

10:19uh disabled people, part of a normal

10:21life. So, I'm I'm not sure.

10:26Let's

10:26>> Is the community that you're referring

10:28to, Janet, the one affiliated with SOS

10:31Cares

10:33>> in Myrtle Beach?

10:35>> I didn't hear what you called it.

10:37>> SOS.

10:38>> SOS. Yes.

10:44>> And isn't there another organization

10:46trying to build another disability

10:49living community somewhere in South

10:51Carolina, too?

10:53>> Yes. That at least the last I knew. And

10:56this was before co so I haven't heard

10:59any of these rumbles since co but before

11:02co it was a real going concern mostly

11:08put together by parents

11:11but they wanted the federal government

11:12to pay for it and so they got slowed

11:14down a little bit and it was communities

11:19across the state. In fact, there's the

11:22one in Myrtle Beach was, if I'm not

11:24mistaken, was already full and they were

11:27trying to get a build another one.

11:32>> Yes, I think they're actually trying to

11:34build one here in Charleston.

11:36>> I would not be surprised.

11:39>> You may know more about that, Amy, than

11:41I do.

11:44>> Yeah. Well, I went to a disability

11:47advocacy event. um

11:51at the state house maybe like 2 years

11:53ago and a gentleman I can't remember the

11:58name or who he was affiliated with but

12:00he was advocating for

12:04creating and developing some type of

12:07community where people with disabilities

12:10all live in the same area.

12:16>> That didn't surprise me.

12:19Um, have has he contacted you since?

12:24>> Um, no. I I can't even remember who he

12:28was affiliated with. If I find it, I'll

12:31email it over to you all. But yeah, I'm

12:34a little indifferent about

12:38disability communities and I feel like

12:41it's just isolating us. Again,

12:45>> I think you're right. Unless unless the

12:48people living in the community are

12:51agreeing to do it and want to do it,

12:53which I guess sometimes it would be nice

12:56to be with people that automatically

12:59understand you. So, if you choose to do

13:04it like an old folks home, everybody at

13:06the old folks home tends to like to get

13:08along and talk about the same things and

13:10they like the same music.

13:12Um,

13:14which I appreciate because I like that

13:16music, too. But, [laughter]

13:19but if they're choosing is one thing. If

13:23they're being if it's being mandated or

13:26if they're having to choose because

13:28they've lost funding, that's when it

13:31bothers me.

13:36And as Kimberly said at the very end,

13:38nothing about us without us. It's a

13:41responsibility. we have to to

13:44be aware of what's being decided. So

13:46that's interesting that you heard that

13:48at the advocacy day, Amy.

13:56>> Yes. I'm not sure which one it was. I

13:58don't know if it I don't think it was

13:59the one affiliated with Abel SC. I think

14:02it was the other one that happens at the

14:04state house.

14:06>> Interesting. Okay.

14:09Yeah. Kimberly might not let him say it.

14:11[laughter]

14:14And she's the director of AEL.

14:16[laughter]

14:20Any more thoughts?

14:26All right, we're going to go backwards a

14:28little bit.

14:30Um,

14:33we had a motion to add um

14:38Michael Drean Drawan's

14:43report on the uh visiting of

14:46establishments on King Street.

14:49It was seconded, but we have to vote on

14:52it, but it has to be unanimous vote to

14:54add it to the agenda. And since we now

14:57have Will and Amy

15:00and

15:01>> Maria,

15:02>> Marie, Maria,

15:05we need their votes.

15:09>> I

15:14Amy

15:16>> I

15:18>> and Maria

15:22>> is she still on? He's on. I just

15:25>> texted him a response.

15:28>> Well, Michelle is here and I say I

15:31>> Okay.

15:32>> Thank you, Michelle.

15:34>> Thank you.

15:40>> Can I make a command decision that Maria

15:42is obviously not

15:44>> attentive

15:46or for whatever reason isn't isn't on.

15:50All right. And the motion passes at

15:52100%.

15:55So, Michael,

15:58you're up.

16:00Yes, sir. Well, I think we had a good

16:03another good session. Uh uh you Alex

16:08Mara and I uh we started at uh Spring

16:12and King and walked down this time uh to

16:16try to get more restaurants um checked

16:20out cuz we had hit a part of King Street

16:23where it was just National Retail and uh

16:26a little bit uh not of you know

16:30everything's pretty up and up with those

16:32um spots overall, But uh yeah, so

16:35anyways, we uh I uh went to about how

16:43many total? I would say less than 10,

16:46but it was a mix of local restaurants.

16:49Um a few um wellness uh places. Um some

16:55were closed, so we just made sure to

16:56drop off um the flyers. Um most folks uh

17:01you know were were nice and and

17:03welcoming. There were a couple of

17:05indifferent people. Um, even there was

17:08like one nice uh men's golf clothing

17:13store uh that had a young guy working

17:15there who just could care what has

17:17handed it to him. And I said, you know,

17:19you could move this chair and move this

17:22thing so I can get to the uh counter to

17:25pay. And he was kind, okay, sure. Well,

17:28whatever. Um [clears throat] but

17:30regardless of him, it was another uh

17:32good day. Um everyone was most people

17:37were super receptive. Um uh and said

17:41there's some things they knew they had

17:42to work on and uh hopefully would uh be

17:46able to get it in the budget and funding

17:49to um to do so. And uh he had another

17:53guy at um was like, "How can I or can I

17:56send this to to my friends in the

17:59community to um help with their

18:02businesses?" And you know, he sounded

18:04really interested in in the ramp. Um

18:07yeah, so it was a good um I thought a

18:10good a good day. What do you guys think?

18:13>> And how many plan how many more times do

18:15you think we need to do it before we

18:17wrap it up?

18:19Um, I think let me take a look at the

18:23map. Um, and see if you think if I think

18:28um, you know, we're done or we we should

18:31be done. I feel like maybe one more

18:33session next month um to get the just

18:38some other some more restaurants on

18:39there. Um, because there's there's like

18:42another block or or two that I think

18:44would be will be good.

18:48Yeah, the um the mayor has requested to

18:51come to one of our meetings and he'd

18:53like to come to the November meeting.

18:55So,

18:57I think it'd be great if we could get it

18:59wrapped up by then.

19:02>> No pressure.

19:03>> No [laughter] pressure.

19:07>> Yeah, let's do uh one in October and

19:10call that it.

19:15>> That sounds good. Thank you all for

19:17doing that.

19:18>> When we do it again,

19:20Alex and I are going to put in a plug.

19:24We need a walker to go with us.

19:26>> Yeah.

19:27>> Some heavy doors.

19:29>> We had four wheelchairs. So, we all had

19:32heavy sore arms when we left, especially

19:36Alex. Alex kept getting up there to the

19:38front.

19:40Michael and Mark and I didn't

19:43didn't argue with them. depending on the

19:46day. Um I I can do it again just

19:49depending on the day in October.

19:52>> I mean it's the only day I think I've

19:53got something but other than that

19:56>> there you go. I'll send out a we'll send

19:58out an email, but Tuesdays at 2 p.m.

20:01have

20:02>> historically worked just um Tuesday or

20:05Thursday, but Tuesdays are usually

20:08>> uh or if you I'll I'll send out an

20:11email, but Tuesdays at two have been

20:13historically um would have worked. Um

20:15you just got to decide on which one.

20:19I was going to ask um

20:21>> for our last one in October, do we want

20:24to do any media for this one or or wait

20:28till I think we had talked in the past

20:31about if we did something again in the

20:34spring possibly doing media at that one.

20:37But um just wanted to throw that out

20:40again.

20:41>> I feel like one more you'll gather the

20:43information from that from that last

20:46one. So that will be the fourth one. And

20:49with that information, then I would feel

20:52very comfortable going for media. Um,

20:55>> what I was thinking we could do was

20:57after we got all done is pick the best

21:00restaurant, the best retail

21:02establishment,

21:05um, and make a certificate

21:08and present it to them

21:12with the media there. That was kind of

21:15what I was thinking.

21:19could be interesting a discussion.

21:22Yeah. Of which ones we've liked. We also

21:26had one.

21:30>> We had one chef practically offer us a

21:32drink before we continued on. So there

21:36>> Wait, I didn't know that. [laughter]

21:39>> I wanted to try the oyster. Alex

21:41wouldn't let me.

21:43>> I wanted to go to the group bar.

21:45>> Yeah.

21:46>> Oh, yeah.

21:49All right.

21:50>> Great. Yeah. Thank Thank you all for

21:52Everybody think about

21:55>> what we ought to do and how we ought to

21:57do the media and we can discuss it next

21:59month.

22:02>> Janet will remember to put that on the

22:04agenda for us.

22:05>> I will I will do better

22:08>> or if I can remember to remind her.

22:10[clears throat]

22:13All right, Alex, you're up. update on

22:16the planning for the 2027 ADA

22:19celebration.

22:21>> All right. So, um we will be having our

22:24next like sort of kickoff meeting for

22:272027 in October. I have not officially

22:30emailed the group yet, but we have set

22:33some dates. Um so, I will get that out

22:36to the to the working group uh soon and

22:40we'll get that going again. Um we for my

22:44last meeting here um we were toying with

22:47the idea of changing locations from Park

22:49Circle to either uh Charletown Landing

22:53or another location that um may help us

22:57out. But but um for those who want to be

23:01a part of the working group um I I sent

23:04out an email and got mostly responses

23:06from everybody who wanted to be on um

23:11and we can move forward with with

23:13planning um for 2027. Um, I think our

23:17main goal for this year will be figuring

23:21out what our purpose is, what kind of

23:22event we want to have, and then that

23:25will help us better plan for the type of

23:28event we want and

23:30um increasing the participation for for

23:34the event. So, that's all I have for

23:37right now and I will take any questions

23:40if there are any. Is

23:42>> Vonyie going to get us free to Charles

23:45Town Landing?

23:46No, but I that that may be a tough one.

23:49It's expensive out there and it's not

23:52>> turn the board. You can get it free.

23:53>> No, there but there there's there's

23:55transportation up there. Yeah, I think a

23:57senior center you sort of have your

23:59built-in audience, but we'll talk about

24:01that.

24:03>> I'll get that email out to the the

24:05working group.

24:07Ma did let me know who to contact about

24:11um the possibility of using a Gilliard

24:15facility.

24:16>> So, I will be able to look at that.

24:19>> Awesome.

24:21>> All I have for my report.

24:24>> All right, we're moving right along.

24:30>> Okay, Janet, you should be

24:33>> Oh, wait a minute. this

24:35>> do that.

24:37>> Yes.

24:39So,

24:40remember we did the city of Charleston

24:44Mayor's Commission on Disability Issues,

24:46goals, and priorities.

24:49You all have a copy of it?

24:54>> I don't know if I emailed one.

24:59>> Did I?

24:59>> Okay, good.

25:00>> Yeah.

25:01>> All right. So, uh, does anybody want to

25:04make any changes to it?

25:21>> Everybody speak up at once.

25:27>> I'm sorry. When was this sent out

25:31>> with the agenda? Maybe.

25:34Do you know when it was sent out? No.

25:36Okay.

25:39>> All right. Well, we we we will resend it

25:41out

25:43next month.

25:46>> You need to come prepared with a list of

25:49things that you want us to present to

25:51the mayor

25:52and city council on what the city needs

25:55to do.

25:58Next

26:01to improve the ADA facilities in

26:03Charleston.

26:05>> So this is to these are new projects

26:07that haven't

26:09>> Yep. or projects that were previously

26:12given to him that they've done nothing.

26:15It will be nice to have him here. We

26:17have just a couple of very specific asks

26:19while he see

26:20>> we did have a very specific ask that

26:23>> I know but but it's yeah just just to

26:26reiterate that these are top two or

26:29three and then yeah

26:33the mayor should join us in at our

26:36November meeting.

26:37>> Yeah. Um, and we want to have the the

26:41goals list ready to to hand

26:44>> to share with him and then subsequently

26:47city council

26:51whenever we can get on their agenda.

26:53>> Right? because my my initial plan was

26:56before he said that he would like to

26:58come to a meeting was to have a a

27:01one-on-one meeting with him so that he

27:04didn't get blindsided with what we were

27:06what I was going to say when we

27:08presented the goals to him for next

27:11year.

27:12>> And remember this is a this is his

27:14committee. This is committee that he

27:15appoints. So

27:18he can fire me.

27:20>> Well, I I think that we are a committee

27:22of cities.

27:24He'll just dock your pay.

27:26[laughter]

27:27>> Yep.

27:30Yes. We are a committee of the city

27:33and our duty as a committee of the city

27:36is to tell the city what needs to be

27:38done.

27:41>> Not to accept the status quo.

27:45>> Right. I'm with you.

27:52So, please everybody have their list

27:56ready for next time.

28:01>> Otherwise, we'll have to sit here till 7

28:03or 8 o'clock at night trying to come up

28:05with a list.

28:06>> Oh, no.

28:10>> Which bar is offering drinks?

28:13>> I'll go there.

28:17>> I Janet. Miss Janet, you're up.

28:20>> Okie do. Well, the first thing I want to

28:22tell you is that a city employee did

28:25approach me about information that would

28:28help people who have um vision issues

28:32when they cross the streets. He's trying

28:34to put together an app that would

28:36augment the audible pedestrian signals,

28:39not replace. And so last Friday, I was

28:43able to connect him with four

28:47Yep. four three commission members and

28:49another person who uses a guide dog and

28:53he could just ask all kind of questions

28:55and we had Amy there we had Michelle

28:58there and we had

29:01can't read

29:03Amy Michelle.

29:07Nope.

29:09Who was there? Amy and Michelle.

29:15Um

29:17>> um Audrey got

29:19>> Yeah, I was going to say Audrey and um

29:22>> the piano player. I can't think of her

29:23name.

29:24>> Laurel. Yeah,

29:25>> Laurel. Laurel Jane.

29:30>> And

29:32I think it went pretty well. the city

29:34employee was very appreciative that he

29:38had people that he could ask who were

29:41actually going to use the the um app.

29:46So, we'll see where it goes, but I feel

29:47like that was a exactly what we're

29:52created for.

29:54>> Interesting. Does it?

29:58I guess it taps into the same signal,

30:03but it's not the signal.

30:06Must be Bluetooth signal.

30:10>> In all honesty, it came up so quickly

30:12that I didn't quiz him about it.

30:15>> Interesting.

30:16>> I just went with it real quick. Do you

30:18understand it, Michelle or Amy, if it's

30:20Bluetooth or

30:24>> No, I didn't get the Bluetooth part.

30:28>> Me neither.

30:29>> I I honestly didn't, but I um

30:34miss you to get his information so that

30:36I'd be able to give him those additional

30:38names that could pop possibly, excuse

30:41me, help him.

30:42>> That's good.

30:43>> That's right. I didn't do that. Thank

30:45you. I will do that. gets you this

30:47contact information.

30:49>> So that's first thing that we've done

30:52and that kind of came up quickly and and

30:55we were able to get it handled really

30:57quickly. The other part is

31:00um I have a form of musculardrophe

31:02called sharky tooth and this is sharkie

31:06tooth awareness month. So, I know I feel

31:09like I talk all the time, but I don't

31:11always talk about me. But, um, I give my

31:14opinions, but that's not about me. Those

31:16are opinions. But, I thought that in the

31:19muscular drophe world, there were easily

31:2275 different forms of musculardrophe.

31:27And I thought that I would tell you

31:28briefly what Shark Marie tooth was

31:30about. Um, and anybody who wants to sign

31:33off now is welcome to go to sleep if you

31:36want. Um but Shakamberry tooth was named

31:40after three French well two French

31:42physicians who discovered it in the late

31:451800s.

31:47It's a it's a genetic abnormality and

31:49it's hereditary. Um and it refers to any

31:54peripheral neuropathy with a genetic

31:57cause.

31:58It's not a specific gene that's mutated,

32:02although they are learning which genes

32:04they are

32:06very quickly. And the one the type that

32:08I have, there's an extra bit. You know,

32:11you have the four proteins on the genes,

32:14the AT. Yeah, mine is an extra bit. So,

32:17I'm hoping they can lock it off one day.

32:20Um, we'll see how that h works. It's a

32:24peripheral neuropathy. Sharome tooth

32:26affects the body by affecting the nerves

32:29that connect the brain and spinal cord

32:31to the rest of the body. It's a short

32:34basically it's the myelin sheath that

32:37covers muscles

32:41disappears and so then the muscle

32:44doesn't have a receptor for the

32:47electrical short and that's

32:50I'm shorting out all the time. Huh? Um,

32:54it affects touch,

32:57it affects muscles and how they're

32:58moving and signals from the brain. For

33:01example, sometimes when I want to go

33:03reach my arm out, I reach and then it

33:06works. You know, it's a delayed factor.

33:11They're working really hard on it. Mine

33:13affects my [clears throat] type of

33:15shirkery tooth affects only from the

33:17tips of my fingers and the tips of my

33:19toes to the first major joint which is

33:22my elbows or my knees. So the rest of me

33:25is is reasonably unaffected and that's

33:28what we thought. But now they're talking

33:30about some types of truckmory tooth

33:32actually involve hearing issues, some

33:36breathing issues. My grandmother had it

33:39and she died when she was 103. So, I

33:42think the hearing issues and the

33:44breathing issues are minor. She did,

33:48however, with the delayed response thing

33:50I told you about a minute ago. She would

33:52get up from the chair. She'd walk two

33:54feet thinking she was all, you know,

33:56doing great. And then we hear whoop. And

33:59then we'd hear, "I'm okay." [laughter]

34:02Because all of her muscles just gave out

34:05and she ended up in a pile on the floor.

34:07And then she got up. And this was the

34:09woman who died at 103.

34:11Um,

34:13most doctors don't understand it because

34:17it's not very clear

34:20to see it in practice, but they're

34:22starting to get it better than not. The

34:24symptoms include muscle weakness,

34:27difficulty walking, balance problems,

34:31numbness, chronic pain, and sometimes

34:34include spinal deformities, fatigue,

34:37hearing loss, hip dysplasia, and

34:39breathing difficulties.

34:42So, this was your awareness for sharkie

34:45tooth

34:47um month. and it's really a lot of

34:50people have shared tooth

34:54but they don't know it. Um and they're

34:58diagnosed late in life like at 40 or 50

35:01and they all of a sudden they're not

35:03functioning. But I had always known it.

35:05I knew it. My mother knew I had it when

35:07I was born. So and my mother had four

35:11siblings. So there were five of them.

35:13Three of them had sharkie tooth. I had

35:17two siblings. There were three of us and

35:19two of us had sharky tooth. I have four

35:22children. Three have it. So, it's always

35:26it's always dominant. Um, do y'all have

35:30any questions?

35:33>> I'm going to have to talk to you after

35:34the meeting.

35:36>> What um

35:38>> what do they do to diagnose? like for

35:41those that may not know cuz you said it

35:43it kind of um shows its face later in

35:46life. So what will usually get someone

35:48to the doctor um where they would even

35:51test for such a thing?

35:53>> Usually the neurologist will do a nerve

35:56conduction study. Um my mother had a

36:00nerve conduction study, my child had a

36:02nerve conduction study. I watched them

36:04both have a nerve conduction study. I

36:06did not have a nerve conduction study

36:08that involves electrical stimuli to the

36:12end of a nerve to see if you twitch

36:14basically and my mother did the whole

36:17thing with tears running down her face

36:20and I wasn't going to do that. I had a

36:23blood study um and they found the DNA in

36:26my they took like so many vials of blood

36:30that it was unbelievable but they found

36:32out that they typed me as CMT charco

36:37tooth 1A

36:39and they figured it out diagnostically

36:42that way. Some neurologists still will

36:45insist upon a nerve conduction study.

36:48And as you might guess, I don't see

36:50those neurologists because I think

36:52they're quacks. So, um, and

36:57it's been interesting. It's been a real

37:00interesting thing. Other questions?

37:03>> Did you mention how many people are

37:07diagnosed with this?

37:08>> I don't have that down on my piece of

37:10information from, but it's it's a lot.

37:14It's more than I realized. The Shark

37:16Marry Tooth Association

37:19um is doing research right now too. And

37:23interestingly,

37:24I my one of my nieces who has shared

37:28tooth participated in an IVF program

37:33because she was having trouble

37:34conceiving and they chose a

37:39embryo, I guess, to implant. And the

37:42embryo, they screened the embryo for

37:45sharky tooth. And so in theory

37:51that child will not have sharky tooth.

37:54I'm just fascinated by that. Just

37:57absolutely fascinated.

38:00So thank you all for listening. And

38:02apparently nobody has fallen asleep. I

38:04appreciate that too. I know a lady I

38:06used to work with at a naval weapon

38:08station who has it and was dealing with

38:11a lot of medical issues. So she stopped

38:14working. But um are there

38:18Is there a wide range of of symptoms or

38:21does it does it vary?

38:23>> There are because there are different

38:25types of sharky tooth. Um, one man I

38:29knew

38:31I'm not sure if he didn't want to wear

38:32braces. I'm not quite sure what his

38:35personal story was. He could barely walk

38:38at all but insisted on walking.

38:41Insisted on not using a chair. In

38:44Canada, they tell people shark tooth

38:46that you'll be in a wheelchair when

38:48you're 50.

38:50Um, if people watch me walk, they would

38:53want me to get in a chair probably

38:55because I'm so unsteady. But like my

38:58grandmother, I bounce right back up.

39:01So,

39:03um, and some people if they don't know

39:06they've had it forever, it can be

39:08mentally very destabilizing

39:11to learn suddenly. Although people think

39:15of musculardrophe frequently with

39:17Duchaine, the childhood version that you

39:20likely don't survive, but I'm going

39:23refer back to my grandmother who's

39:24[clears throat] 103. So that shark our

39:28form of shark or marie tooth does not

39:31won't kill me just irritate me

39:34and getting there.

39:36>> So that's all for the coordinator's

39:39report for today.

39:42>> Thank you for sharing.

39:43>> Thank you for sharing

39:46for people who can't see it. [laughter]

39:49>> I did have another question for the um

39:52first part of your report.

39:53>> Yeah.

39:54Um,

39:56>> the APS the um app that people that

39:59we're developing potentially.

40:01>> Um, do you all need anyone else to be

40:04like to use the try app out or need

40:07further?

40:08>> Oh yeah. Would you do you if you have

40:10suggestions?

40:11>> I know a lady another um the lady who

40:15lived off of Savannah Highway and one at

40:17the the um the APS there um her husband

40:21works at the base with me. So, she may

40:24be potentially another candidate for

40:26>> Okay, good.

40:27>> I can get her information for you.

40:29>> I had the feeling that he his name was

40:32Willie. Um, Willie

40:36Hassel. Um,

40:38>> Harold. Something like that. Harold.

40:41Yeah. Willie. Was it Hassel or Harold?

40:44>> Hassel. H A S E L.

40:47>> Okay. Okay.

40:49Willy Hassel. Um,

40:53if you send me her name, I will

40:56just put her in the because Audrey

40:58Gunter and Laurel weren't in, you know,

41:01they weren't commissioners, but Audrey

41:03calls me a lot, so I knew she I knew

41:07she'd participate.

41:11>> Other thoughts.

41:15>> Anything else to add to the meeting?

41:19Um, and yes, one more thing. Um, Janet,

41:22did you receive an email from a lady who

41:25was referred by Debbie from the College

41:28of Charleston? Um, about

41:31protests and

41:32>> I did.

41:33>> Do you want to mention any of that or

41:36>> That's a complicated one.

41:39Um, I received a letter

41:42from a group that is

41:46they're focused on amend the first

41:49amendment to the constitution,

41:51communications.

41:53They're speaking

41:55free speech is what they're focused on.

42:01And they they have posited that the ADA

42:09requires free speech. No, that people

42:12can

42:13>> It was that

42:14>> it was that when they protest

42:16>> protest that you can be in a chair can

42:18bring a chair.

42:19>> Yes. They want to bring a chair. Thank

42:20you. Bring a chair for protests. And

42:23>> and if that would effect would the ADA

42:27allow you to do that essential,

42:29>> right? Does the ADA allow that? Now,

42:34it it's very undefined

42:37because the ADA only recognizes

42:40the wheelchairs,

42:43walkers. The ADA doesn't even recognize

42:45scooters as being assisted devices.

42:50The other part is

42:53if you're

42:58if you put a chair in a normal park,

43:00that's not a problem. But if you put a

43:02chair where people walk,

43:06that's a problem because you're blocking

43:08other people.

43:13There was something else about it that

43:14I'm missing though, Alex. And I have to

43:17look back at the email, but um

43:20this person was just wanting to get some

43:22insight on

43:25what people with disabilities felt about

43:27the situation. If you attended a

43:29protest, were you ever um told to not be

43:33there because you're in a chair? Um

43:36>> because No, it's not because of having a

43:38wheelchair.

43:40>> That's how I thought it was.

43:41>> Oh, no. It's it's bringing chairs with

43:46you, like lawn chairs,

43:48>> but there's a disability component to

43:50it. So, I didn't know why.

43:53Like, if I went to a protest in my

43:55chair, would the police tell me not to

43:57be there because

43:59>> No, the police would not.

44:00>> I don't think they could do that.

44:02>> So, I'm not quite sure what the

44:04connection is to what

44:05>> they wanted to bring their own chairs

44:07for people to sit in.

44:09>> Oh. during a pro like a lawn chair.

44:12>> I got you.

44:12>> To sit in for a protest

44:14>> for like really long protests.

44:17>> Yeah. Potentially

44:18>> or older people too. And I appreciate

44:23older people being there, but they can

44:24also come in wheelchairs which are

44:27recogniz. So

44:29the ADA doesn't recognize lawn chairs.

44:33>> You guys are all

44:34>> Huh? You guys are all too young for

44:36this, but back during the Vietnam

44:38protest,

44:39they were all sitins.

44:42>> It's true.

44:44>> But people with disabilities couldn't

44:45get down on the ground necessarily, so

44:48they might bring their own chair.

44:50>> Oh, no.

44:52>> But sit in people got arrested, too.

44:55They were all That was the point. So,

44:58that was the the gist. They were asking

45:01about

45:03can't we use the ADA to

45:06reinforce free speech

45:10and I didn't see where

45:13the ADA mattered.

45:16They would they nobody was being

45:18excluded because of a disability

45:21and bringing a lawn chair

45:24was

45:26not you know lawn chairs aren't

45:27recognized.

45:29There were other thoughts that went into

45:30it too, but it was one of those ADA

45:33conundrums

45:35where it was not a clear ADA

45:39issue where somebody was using the ADA

45:42to bolster another issue. Um, and that

45:46didn't work from my perspective. So, the

45:50hearing was the 15th. He said um it was

45:55going to be on

45:57Tuesday. I think it was that um but then

46:01they're going to probably bring it up

46:02for the next month's meeting and so if

46:06people wanted to

46:07>> I can send them the entire legal memo

46:10that goes with it. It is tedious and

46:12long.

46:14Um but yeah, I thought they were

46:17deciding on the 15th.

46:19Other questions? Any other news? That's

46:22all I've got.

46:23>> No.

46:24>> Any other last thoughts top of mind?

46:28>> There aren't um any last thoughts, but

46:30if I can make an announcement, that

46:32would be great.

46:34>> Okay.

46:36>> Um even if it's about another

46:38organization, would that be okay?

46:41>> Sure, why not?

46:42>> As long as it doesn't involve children.

46:47>> Oh, no.

46:48>> That's a joke. I wasn't I wasn't being

46:50serious.

46:52Okay. [laughter] Um this is Michelle

46:54Scott and I am president of the

46:56Charleston chapter of the National

46:58Federation of the Blind. And I wanted to

47:00share with you all that we are having um

47:02our fourth annual talent showcase which

47:05is going to be on October 3rd at the

47:08Park Circle Community Center. Um

47:11admission is $10. Um $5 for kids 10 um

47:16and below. And basically it's

47:18celebrating blind equality achievement

47:20month where um there will be musical

47:23talent, lots and lots of musical talent.

47:26Um as well as some people displaying

47:28their crafts um and their arts. Um and

47:31it's a sit down um informal but yet

47:35dressy, you know, type event all

47:37decorated um with heavy derves and

47:40everything. And um I would love you know

47:43if some of you came out in which to

47:46support that. Um again if you have any

47:49particular questions um my email is

47:51within the um email groups that Miss

47:54Shumar sends out but just in case it's

47:57Michelle Scott20203gmail.com

48:02um if you're interested in attending or

48:04even if you just want to make a

48:05donation. Um it is a fundraiser for us

48:08and we're actually raising money so that

48:10we can get Meta AI glasses um for our

48:14blind and low vision um members that do

48:17not have them already. Um so that is the

48:20the reason for it and the occasion again

48:23is blind equality achievement month.

48:25Thank you so much for allowing me to to

48:26do that.

48:31>> All right, that's a Saturday.

48:34>> Yes, sir. It is a Saturday. first

48:35Saturday in October.

48:37>> Michelle,

48:38>> what time?

48:39>> Um, I apologize. From 5:00 p.m. to 7:00

48:42p.m.

48:43>> Okay.

48:44>> If you have a brochure that you'd like

48:46to send to me, I'd be happy to send it

48:47out to my list.

48:49>> Okay. I have um I have the flyer. I will

48:52send it to you.

48:53>> Thank you.

48:54>> Thank you. Thank you.

48:58>> Any other top of minds?

49:05All right. Well, our next meeting is

49:07October 16th.

49:10Same time, same bat time, same bat

49:12channel.

49:14Remember,

49:17bring something that you want to see

49:18improved

49:21or fixed

49:24that we can add it to the list.

49:28I'll entertain a motion. Make a motion

49:31to adjurnn. Second.

49:32>> We'rejourned.

49:35>> We didn't have the minutes.

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