Hurt feelings - looking for advice

[poppydarling]

My High School holds an annual luncheon at a venue that has a huge parking lot bldg & enclosed walkway about 2-3 city blocks long. It is lots of walking to get to the banquet hall where that event is held.

This is sooo wild but I think we went to the same high school, if this event was held near O'Hare Airport?! Crazy! I don't attend because I now live 500 miles away, and would need help driving up! But unlike you, I think they should consider all alums, including those with disabilities or mobility issues, when planning this event. There are women attending from Class of '37 for crying out loud!

[poppydarling]

That is shocking. Did anyone complain? I would have raised hell.

Oh, our "support" group is held in a room in a massive building, two city blocks away from the nearest handicapped spots, up a steep flight of stairs or a ramp that takes you half a building away from the direction you need to go in. When I asked where the elevators were, they said they didn't work on MS meeting days. I don't attend anymore.

[poppydarling]

I don't think anyone was suggesting the OP ask for a change in venue if things are already booked, but to make it clear that these places are inaccessible to avoid this type of thing in the future.

It is all well and good to accept that there are things/places we will not be able to go to, but a little education goes a long way especially for future accomodations for everyone. If nothing is said, then the opportunity to educate is lost.

Do I expect people to consider accomodations for "just" me? No. I expect people to consider them for anyone.

I absolutely agree: if we can't change the situation, but can make it better for ourselves or others in the future, it's our obligation to speak up. Kindly but firmly. Nobody else will do it for us, and it's not acceptable to live a smaller life because others don't understand. It's our job to make sure they do.

[misslux]

Oh, our "support" group is held in a room in a massive building, two city blocks away from the nearest handicapped spots, up a steep flight of stairs or a ramp that takes you half a building away from the direction you need to go in. When I asked where the elevators were, they said they didn't work on MS meeting days. I don't attend anymore.

That is so crazy! Was this an official group of the NMSS? Geez, I'd be tempted to contact the local media.

[DebbieB]

I'm with Misslux....it is quite outrageous that a NMSS Chapter is not sensitive to the physical layout of the venues in which they hold events. This is just crazy. I bet the National would just die if they knew (hint hint).

I always try to resolve 1-on-1 first, but I have no problem filing a complaint (officially if need be) if the issue isn't resolved.

NMSS Chapters should model this behavior, and I'm extremely upset to hear that folks trying to access events and support groups are unable to do so.

[aitch10]

I agree that, while it's hurtful and disappointing to feel excluded in such a way, it probably wasn't intentional and doesn't require an extreme response.

Most people don't get it. In fact, almost nobody does. My husband is the sweetest and most understanding guy on the planet and he's been with me since before MS, so he knows the toll it's taken on me, and even HE doesn't get it sometimes.

So yeah, like PP's have said, don't assume the worst and let them know your needs for future reference.

[palmtree]

This is so hard. In May my son will be graduating from medical school. He wants so much for me to be at the ceremony. Having me absent at these events has left a hole in his heart. Right now I think I won't go. We would have to rent a wheelchair and my ex would have to push it. Then, will there be handicapped seating?

But maybe I should try.

[misslux]

palmtree, have your son ask about accessibility ASAP. I would be shocked if they didn't have accomodations (complain to the appropriate parties if they don't -- it is a medical school!)

Rent or borrow a chair (ask your local NMSS) and go.

[poppydarling]

That is so crazy! Was this an official group of the NMSS? Geez, I'd be tempted to contact the local media.

Yes, it is, and the coordinator is very defensive when any feedback is given, so it's not worth the breath. I was tempted to call National head office and say: really?! I think they have a hard time finding people to step up and lead around here, though, which is why it's this way or the highway, maybe. I thought about running a group myself but prefer to do a podcast instead.

[misslux]

That is pretty shameful.

Hey, let me know when you have your podcast up and running!

[poppydarling]

That is pretty shameful.

Hey, let me know when you have your podcast up and running!

Maybe you'd want to contribute?! ::hinthint::

[misslux]

Heh. I'm not sure what I would say!

[poppydarling]

Heh. I'm not sure what I would say!

That's what EVerYbody says! I would take your hand, and it would be fine I will ponder and come back when I'm ready to go and hope you'll consider jumping in!

[misslux]

Sure, let me know how I can contribute!