This is part of our series highlighting a consumer’s guide to seating and mobility equipment. Check out The Wheelchair Handbook for more information about the wheelchair service provision process.
Last week we highlighted a conversation between Andrea Dalzell, a registered nurse working in New York City, and Grant Brogan, Inbound Marketing Specialist for Permobil Americas where they discussed the importance of an ultra lightweight wheelchair. Today, we continue that conversation between Andrea and Grant as they discuss the importance of being a self-advocate and how important the Abilities Expos can be for consumers. This interview with Andrea was edited and condensed for clarity.
On being a self advocate and Abilities Expo
G: Now we know what you’re rolling in, I’d love to hear your thoughts on when you go in to start this mobility equipment selection process. What’s important to you when selecting complex rehabilitation technology (CRT)?
A: First thing first is having someone that understands and listens. You know, a lot of people in the business like to say, “Yeah, yeah, I know. I know.” Even if you see thousands of people every day, everyone is different. Are they listening to that particular person? What might have worked for someone may not work for someone else. What the provider may know about the product may not necessarily work for everyone. Having someone take that time to listen and understand how the consumer is using their mobility device on a daily basis. Someone using a mobility device at home or to get to the grocery store is very different than someone who is going to a hospital setting every day, or a clinical setting every day, or going to an art setting every day. Everyone is different, and the way we use our devices is very different. You can’t put someone into just one box saying that this is what we can give you.
It then turns into you being able to advocate for yourself and saying no when something isn’t going to work for you even if the provider tells you it always works. Learning how to hold your ground and not allowing someone to tell you what works for you when you know what works for you. Also allow yourself to ask ‘what if this doesn’t work’? What are my options? Also think about how can we get someone else in on the conversation to make sure that this would be the right option.
G: How can we get more perspectives and more knowledge? From what I’m hearing, it’s so important to be your own self advocate.
A: You have to be a self-advocate. We don’t always know the answers. And we don’t always know the questions to ask to get the answers that we need. We do need to have different prospective, so we can have a multitude of information to be able to choose what may or may not work us as individuals. If you’re only going to have one side of the story, then you don’t have a full picture, and therefore, you’re already at a disadvantage.
G: That’s such a powerful message. I’m curious to hear your thoughts on ways someone who is brand-new to CRT could broaden their horizons and gather more perspectives. Do you have any ideas or steps they can take to gather more knowledge?
A: Yes, go to an Abilities Expo. It’s valuable being able to see all types of wheelchairs and mobility devices in person, talk to other wheelchair users, and talk with the people who work for the mobility companies who have knowledge of the different models of wheelchairs but also seating. You can speak about products that work for your particular needs such as height, weight, and mobility.
It gives you clarity to be able to speak to all of the reps that are in your region and knowing who to talk with in case I have any questions. Even if you’re going the insurance route, the Abilities Expo gives you the ability to gather knowledge and get feedback. I would say start with an Abilities Expo. Try to go in person, but I know it’s not easy for a lot of us to travel to them, so check out the virtual options if you are unable to attend in person. Get online and connect with a rep for one of the mobility companies and get that information you need for certain chair models. My preference is Permobil and this is my third chair with Permobil. I will not switch, especially now having completed a 26.6 mile marathon in my manual wheelchair. This wheelchair is dependable and has gotten me through one of the hardest things I’ve done. I would recommend anyone to check out Permobil.
G: One of my favorite Abilities Expo stories is from this last New York Abilities Expo. We had a man visit the Permobil booth looking at our power wheelchair options, so we got him in a power wheelchair. He was also curious about vans, and he rolled over to the BraunAbility booth. He was able to put the wheelchair in the van and park it, and his dad was able to load up the ramp. They were actually able to try out the experience which was an exisiting pain point in their lives. So, that’s just an amazing use case of the Abilities Expo for me. Where else besides an Abilities Expo are you going to have not only the wheelchair that you’re thinking about, but the van that you need to be able to get around in one place to try out.
A: This is one thing I really love about the Abilities Expos is it brings all these brands that are literally focused on making sure that the end user (those that are using the complex rehab technology) are all in one spot. It’s imperative these companies continue to go back to the Abilities Expos because it’s literally the only place that we get introduced to the companies and products. There isn’t a market, I can’t go into a free standing Permobil store as much as I would love that experience. I always say if you want to see a product in person, go to an Abilities Expo. Be sure to talk to a rep and tell them what it is that you’re looking for because they know the answers to any product questions you might have.
G: Folks, being your own self advocate is incredibly important as is exposure to products through an Abilities Expo.
A: Whether obtaining equipment is through insurance or if you’re buying it out of pocket, whatever the case is, get the knowledge and information you need, start to seek help, reach out to people, reach out to influencers on social media. I’m the seated nurse, and while I might not always have the ability to answer you, there are definitely people on my page or that I post who can help guide you.
There are many more ways to advocate for yourself apart from the Abilities Expo. Check out the resources chapter in The Wheelchair Handbook and see if some of these resources can help in your journey.
Click here to watch the webinar which includes the full conversation between Andrea and Grant along with a Q & A session following the conversation. For more information about the wheelchair service provision process check out the The Wheelchair Handbook: A consumer’s guide to seating and mobility equipment.
Permobil Clinical Education Team
This information comes from the Permobil Clinical Education team which consists of a group of Occupational and Physical Therapists.