This week we are speaking with the founder of LGMD2L Foundation Ralph Yaniz, where he looks to find treatments and cures for his form of muscular dystrophy. Throughout his career he’s always supported others and advocated to help them voice how they feel.
Why did you decide to start sharing your stories about living with your disability online?
I have always been involved in what I call advocacy related work. I spent my career working in the non-profit, non-governmental arena in the areas of mental health and aging.
After a long career, and after having begun to have symptoms of my form of muscular dystrophy (LGMD2L) at age 47, I retired at 56 and started the Foundation for my illness. And I immediately began to get involved in the work of disability advocacy. I immediately connected with MDA (Muscular Dystrophy Association). I was part of their first National Community Advisory Committee. I was also working with several other national non profits in the United States and my story began to get out as I wrote several blogs for MDA.
Then this year, I was honored to accept a role as a columnist for BioNews Service’s Muscular Dystrophy News Today site. I use this column to write about disabilities and my own experiences. I also manage several social media sites. One of these is a closed Facebook group for LGMD2L. The others are my own and my foundations sites on Facebook and Instagram and Twitter.
Ultimately, I share my story to help others find solutions. We must live creative lives and we can learn from each other.
Can you tell us about a good and a bad experience that you have come across due to accessibility?
A good experience for me is anytime I can have the specific type of accessibility I need, but also when I can see variety in access and seating options because we are all different. So I can site several restaurants where I live that have built very easy to use ramps to enter the building. These ramps allow individuals in wheelchairs to enter and for people like me, walking with a cane and unable to do stairs, I can easily access via the ramp. It is not too steep.
Then, inside these good places there are low tables and high tables and seats with arms and seats without. There are barstool height chairs. There are booths. And maybe even couches. My illness has taken me on a progression. From preferring low chairs with arms, to then low chairs without arms, to now higher chairs or bench/couch like seats.
In terms of a bad situation, I can say various stadiums that I have been in that have a designated seating area for people with disabilities. If you have a wheelchair you can roll up and be comfortable in your chair. But because they have no variety, someone like myself has to sit in a small, cheap folding chair. I have had to get out of the seats by struggling and hurting my shoulder and today I can no longer even consider sitting in seats like this. And the situation is made worse because when you ask for a higher seat, and they are available in the stadium at various bars and restaurants within the arena, they refuse to get one of those for you.
One additional bad experience Is with air travel. People in wheelchairs cannot go on the plane with their wheelchair. They must be transferred. And people like myself are often not given what we should have by law, which is the ability to board early and safely and not in a crowd. Several airlines have been very bad about doing this.
What improvements do feel still need to be made in the field of accessibility?
I mentioned some of these above, but I think with airline travel we need to have a space for a wheelchair on commercial airlines. It may not mean every flight to every destination but if you are in a wheelchair you should be able to get a good flight to any destination you want to go to with space for your wheelchair.
I also think that all public areas and restaurants and stadiums and anything else where the public goes needs to either hire people with disabilities who can advise them on all the little things they can do to make everything so much better. I have actually volunteered to do this for some places and they have refused.
It’s hard to imagine the thinking that goes into refusing suggestions to make things better.
Where are your favourite cities or countries to visit in terms of accessibility?
I think every city I have been in has strengths and weaknesses. Some of them are hard to work around because when you are in a city that has a lot of hills or is an older city it isn’t always easy to make it fully accessible. I will say that in Europe I have had more difficulty with restaurants and other public venues that have a step-in at the front door.
I assume anybody in a wheelchair would have to be lifted in and for me it is very hard to get inside. But that also happens in the United States and so I always have to look ahead and plan and look at pictures on the Internet so I know if I can get into a place.
Cities like my own Chicago are very flat and so they are normally easier to get around but you also have to watch out for sidewalks and uneven walking areas. I have traveled to many places in Europe — Spain, Belgium, Hungary, Austria, Germany, Czech Republic, and other places around the world and I can usually figure out where I can access what I need.
Do you feel virtual experiences would help individuals who have special access requirements to navigate society?
I think virtual experiences might very well be helpful. As I mentioned above, I often use pictures and videos on the Internet to get a better sense of specific restaurants or public venues. I think virtual experiences might take this a step further with helping people to specifically learn how to get around in certain areas.
Maybe these virtual experiences can be done in situ so that if for example you are going to visit Barcelona, Spain you can have a virtual reality video taking you through the streets and maybe running into accessibility issues and seeing how people can deal with those. I think this is a very good idea and I’m sure would help tremendously.
Thank you Ralph for sharing your insights and the crucial advocacy work you do that is helping to educate and change mind sets.