Back from the dead

[eizbear]

Hello all,

Old user back from the dead, so I thought I might as well introduce myself again.
My name is Andréas Karlsson and I live in Sweden. The reason why I’m here is because my 13 year old son has spinal muscular atrophy and his special need have always been a few levels higher than what the healthcare providers can offer. They simply don’t understand that sometimes it is the millimeters that makes the difference for what works and what don’t.

Luckily, I’ve always been interested in adapting and tweaking my sons equipments to make sure he can be so independent as possible. I mean, I honestly feel that there is an huge gap of available products in the market. And the things that do exist are often not very well thought out. Basic features that should be available to enhance individual independence haven't even been considered by the manufacturers. Speciellt when it comes to assistive devices for children!!

I also want to take the opportunity to share some cool news from me and my sons latest adventure. Back in 2021 I contacted a company called 8BitDo about making an accessible gamepad for my son. A looong story short. My son loves gaming but have always been limited to what he could play due to his muscle being very weak. We sent our design and ideas. 8BitDo accepted the challenge and we managed to make the gamepad in less than a year. DHL got word of our story and wanted us to be in their yearly “Connecting stories” - where we were “connecting gamers”. So a team from BBC came to our house and were here shooting for 3 days - which in all resulted in a video that is around 2 min long hahah. it aired on all channels in the BBC Network world wide. This summer we received word that we won bronze price in IDSA’s International Design Excellence Awards 2023. So in august we were flown in to New York to receive the price together with the team from 8BitDo. My son is the youngest contestant ever to receive this award, so pretty cool I must say!

[martin007]

Greetings from Spain.

[LROBBINS]

What is your son's name? That prize was quite an accomplishment for both of you and I hope you both can continue to break barriers.

[eizbear]

Greetings from Spain.

Thanks mate!

[eizbear]

What is your son's name? That prize was quite an accomplishment for both of you and I hope you both can continue to break barriers.

Thanks! His name is Oskar.
Yeah, I also hope we can continue to break the barriers and get more companies to open their eyes to “our world”.
I really wish there was some sort of forum where users could meet manufacturers and share ideas. They make the products for us, so why not create a place/platform where they can listen to our thoughts about certain things and functionality. Things might turn up great, like our little gamepad.

[LROBBINS]

hey make the products for us

Really? Or do they make the products for the insurance companies (in U.S.), or government agencies (this part of the world).

[martin007]

Or do they make the products for the insurance companies (in U.S.), or government agencies (this part of the world).

I think that things are not always black or white.
There are a lot of nuances.
What I´m convinced of is if there is a product on the market that meets my needs, I would buy it (if I can afford it).
You will never be able to buy something that does not exist.
The product may not meet your needs 100%, but it starts with something.

[Burgerman]

But the market (and market forces and legislation) decide if you can buy a product too. And IF it is ever made to begin with. Rear drive powerchairs are a case to point. Here common many different ones. US not so much... Because of the overly regulated and corporatist possibly corrupt way the US system works against the users.

The exact opposite to say medical treatment. ere we have the NHS!

TEN PERCENT of the country have been waiting more than 3 months for medical treatment. In some case much more. Just watched a bunch of people interviewed that had been waiting OVER 10 YEARS! Not to mention its the most innaccessible and the most expensive (20.6% of gross national earnings) on the planet. And ou cant even speak to a doctor mostly without some triage system apointment... Its useless. But then socialist anything is always useless.

[biscuit]

Nice work, congratulations!

... some sort of forum where users could meet manufacturers and share ideas. They make the products for us, so why not create a place/platform where they can listen to our thoughts about certain things and functionality. Things might turn up great, like our little gamepad.

In general, we have to meet our own needs with hardly anything commercially available. Probably anything marketed specifically to disabled users has to meet stringent and costly safety regulations that are intended to protect the most unable persons. Witness the annoying programming on wheelchairs, it can't be done that way for anyone's pleasure, it must be to make it marketable to carers who do not have to use the machine themselves.

I suppose that if a company can think of a way to monetise a good idea, then it would not hesitate. It would not surprise me if an employee periodically glances at forums such as this one and pays some attention to awards such as yours, to see if any business opportunities come up. But it must be difficult to bring anything new into the market, disability is a difficult market and on the whole disabled people have very little buying power.

[Burgerman]

Because the vast majority of end uusers and OTs and physios have no idea of the compromises that their wants and ideas cause. On a powerchair everything is a compromise long befor they want to add a coffee maker or more speed, or whatever. This is the problem with chairs now. In the US we have almost complete dominance of mid or front drive chairs. Because of OTs and users telling the manufacturers in study groups that they are better on curbs or indoors.

But thats only true because almost every rear drive chair comes as stock about a foot too long with swingaway footrests and the seating that puts all the weight on the front casters making them terrible! But they dont need to be that way. Be careful what you wish for! Then they want narrower.. And lower seats... Which results in smaller batts and range issues that they then complain about. Because they dont understand the consequences of their ideas.