A friend has asked me if a totally blind person can use an insulin pump. Does anyone know. Thanks,Nancy
Insulin pumps are completely inaccessible for those who are blind or severely visually impaired.
Having said that, there are people with no vision who do use them, often with assistance from their doctors or a sighted family member. Infusion sets can be inserted fairly easily without vision once a person is trained. The cartridge is fairly easy to fill, too (especially when filled from room-temperature pen cartridges, there are almost no bubbles). The touch/audio bolus feature, which can delivery a basic bolus of insulin, is accessible. Excluding the touch screen Tandem pump, the buttons on many pumps are easy to distinguish by touch.
But that's where "accessibility" ends.
The features that allow you to enter a number of carbohydrates and have the bolus automatically calculated are not accessible. So is the feature that allows calculation of complex boluses like combo or extended boluses. Changing basal rates or using a temporary basal rate is not accessible. Adjusting pump settings is not accessible. Reviewing the pump history is not accessible. Loading a new cartridge, priming tubing, and filling an infusion set cannula are not accessible. Alarms and warnings that pop up are not accessible and usually need quick access to a sighted person to figure out what they are saying. Basically, anything that relies on the on-screen text (which is almost all pump features) is not accessible.
To a certain extent, with some pumps you can memorize the menu structure and, if the pump has a feature where it beeps with each button press, you can count those beeps and do simple things like suspend the pump. When I was using a Cozmo I couldn't see the screen at all, even with a magnifier (too small and low contrast) and I used this method to do pretty advanced things like calculate combo boluses. But I also ran into some problem because of not being able to see the screen. The Cozmo was the best pump for this menu-memorization-and-key-counting method, but it is no longer available. I think the only pump that has this key beep feature are the Medtronic pumps. I use an Animas and it does not have any key beeps. Pumps with "wrapping menus" (that is, menus where you jump to the top after hitting the bottom and pressing the down arrow again, or vice versa) are less accessible in this regard than pumps that have fixed menus, because if you get lost you know you can press the up arrow a bunch of times and end up back at the top, rather than ending up at some random location if the menus wrap which makes it impossible to know where you are.
There is a mailing list out there for blind diabetics that your friend may want to join. Quite a few of us who are legally blind or totally blind on the list use pumps. Personally, if I was totally blind I would not feel safe using a pump without regular access to and assistance from a sighted person, which would drive me crazy because I like to be independent.
I would also encourage your friend to write some of the pump companies and ask if they have an accessible pump and/or request that they include accessibility features. Pump accessibility is a major issue that has been brought to companies many times over the past ten or so years. Large blindness advocacy organizations have been involved with no noticeable change. Considering diabetes is a leading cause of blindness, and that the pump is a life-sustaining and -improving technology, I find it disappointing that pump companies have made no real effort to include any type of accessibility features in their pumps. And don't even get me started on CGMs—that's a whole different level of inaccessibility with all its reliance on graphics!
Anyway, sorry for my rant there ... If you want, you can PM me with any questions. :)
Thanks Jen for all the info on this. Could you tell us more about the mailing list and any other resources you have for blind diabetics?
The mailing list is called blind-diabetics and is run through the Yahoo Groups site. Some of the national consumer groups in the US (the NFB and ACB) also maintain their own mailing lists for their members who have diabetes.
There are numerous articles about using an insulin pump with little to no vision, written both by pumpers and by organizations. Here are links to some of them:
Diabetes and Visual Impairment: Are Insulin Pumps Accessible? - A study of insulin pump accessibility from the AFB, published in 2004 so older, but essentially nothing has changed in terms of accessibility over the past 10 years.
Many Blind Diabetics Successfully Use Insulin Pumps - An article interviewing many blind pumpers, again an older publication from the early 2000s, I think.
Are Current Insulin Pumps Accessible to Blind and Visually Impaired People? - A study of insulin pump accessibility published in 2009 (full text available).
Accessibility of insulin pumps for blind and visually impaired people - A study of insulin pump accessibility from 2004, only the abstract is available.
Pump Accessibility - An article written by a pumper who has used it both sighted and blind.
Pumps Are Possible Even If You Can't See Them - Article by a blind pumper about how to work around the inaccessibility of pumps.
Hope some of these help! They are mostly older articles, but nothing has changed over the past 10 years. (Heck, we are still trying to advocate for basic glucose meter accessibility! People with diabetes who need a fully accessible meter have only TWO choices to pick from out of the dozens of meters on the market in the US, and only one choice if they are in the UK, and they are out of luck if they are in Canada.)
About 10 years ago there was a lot of advocacy work going on trying to get companies to at least acknowledge the need for pump accessibility. These days, with everyone interested in smaller and sleeker, the blindness community has practically given up, even though it's more possible than every with today's technology! I hear many comments about how accessibility would somehow negatively affect the quality of the pump, jack up the price, make it bulkier or uglier ... I don't think any of this is true.
But no one seems interested in accessibility until they one day find themselves needing an accessible option ... And the community of people who are visually impaired and have diabetes is so small that there will never be a strong enough voice unless the mainstream diabetes community stands behind the issue.
Anyway ... again ... sorry for my rant!! :)
Is there anyone working on an accessible pump? if not, why not! This causes me no end of peevishness and consternation that we would not in this day and age not have an accessible pump!
what would happen if a few of us who needed this technology were to sue them for failure to meet their ADA obligations? I'm willing to start a class action process... there's even a blind attorney in our region who might be willing to get on the band-wagon... and it might just shame them into it.
BTW -- my i-phone accessibility doesn't add anything to the features, it's embedded in the device.
I've used iOS as an example of accessibility before that doesn't add anything to cost, weight, or sleekness. Plus, many people don't even realize that things like ATMs and ticket kiosks are accessible if headphones are plugged in ...
I'm not in the U.S., and we don't have any law like the ADA here in Canada, so I don't think I have any power to help with a lawsuit. I've wondered why the NFB has never done this, though, since they've sued a ton of other companies and seem to get results. I'm not convinced that suing is always the first thing that should be tried ... I like to think that if enough people expressed interest in an accessible insulin pump that at least one or two of the companies would listen. Ten years ago accessibility probably was a technical limitation, but that's no longer the case today.
I'd be curious to know how many others in the DOC have a need for an accessible pump ...
At one time there was a relatively small company, I believe the same people that make the accessible Prodigy Voice meter, who were working on an accessible pump. I haven't heard anything about its progress in years, though, and suspect it has faded away and will never come to fruition. It would be nice of one of the established companies would step up to the plate.
All I can think of would be that device (I saw a report on the news about it a while ago) that helps by reading the codes on products in grocery stores and can also read the prices. Maybe that could be applied to using a pump?
Those devices are barcode readers. They read the barcodes on the products (the same ones that the checkout scanner uses) and then matches it to the product name and price in a database. It wouldn't work with the pump because it doesn't actually read anything off the product—it simply recognizes the barcode and connects to a database to read whatever information has been loaded into there. Since the information on the pump screen is constantly changing, reading out some piece of static information in a database wouldn't do much (although it could be useful for things like carbohydrate counting of food packages, assuming nutritional information was included in the database). What the pumps really need is text-to-speech software that can verbalize what is being displayed on the screen and reflect any changes the user makes.
This sounds like it is totally from out in left field but...I recall reading about a woman who wrote to either Steve Jobs or Bill Gates and introduced herself as a person with type 1 who used an insulin pump. Then challenged them to come up with something better. Lo and Behold, engineers were assigned to create an insulin pump based on users preferences. Granted it isn't coming on to the market, but maybe it could be a start. You would think that with vision complications such a possibility, that there would be a talking pump.
My brother is an engineer, and I bet he could take apart a pump and make it talk if he was interested ... I don't think it's technically hard to do. I just think no company is interested. Your idea of writing to someone isn't a bad one, and in fact I've thought before of submitting an entry to some of these diabetes design contests that are out there, but lack of time has always stopped me.
With some of the older glucose meters (One Touch Profile, One Touch II, SureStep, Accu-Chek Advantage, etc.) you could get devices that could be plugged into their data port to provide speech output. With today's pumps sending RF information back and forth between devices, you'd think it would be possible to create a type of "receiver" like that without even having to build an entirely new model of pump. I think it basically comes down to money and demand for the pump companies; they aren't going to make much money by building speech into their pumps. Although I think they could find creative ways to market it, like having a CGM read out data while driving or alarms that read out what's wrong, those things could be helpful for everyone. Some of the pump companies like Roche even dabbled in accessible meters (Accu-Chek Voicemate) but eventually discontinued these products when they became outdated and never replaced them with newer technology.
I have been researching this topic for a while for a school project and try to figure it out that how many people with visual problems in the US and in the world would use insulin pump if there was one prefect device existing for them. I checked the article that you mentioned and calculated nearly 50,000 people in the USA would use the insulin pumps. Do you think that is this an accurate number ?
I’m not blind but I’d like a pump that would speak my bg numbers (I use the Enlites), if it were loud enough to hear over ambient noise. We use MapMyRun for hiking and it’s set to read out our distance and other parameters on a regular basis. Having my bg’s read out the same way would be very cool.
I’m not sure off the top of my head, since I’m not in the US. However, the people at AFB are really friendly and may be able to help if you contact them (I think it’s the AFB Tech team who did the insulin pump studies). It would be interesting to know, and maybe catch the attention of some companies.
I bet you’re not the only one who would like this type of feature. It would probably be useful to people driving, exercising, or who just tend to ignore their pump when it alarms. But “accessibility” is so much more than voicing one bit of information. Voicing glucose values would be a good step, but if that was the only piece of information spoken, then the device would still essentially be inaccessible. Ideally there would be options in the menu to turn full accessibility on and off (or a “shortcut” like holding down a certain button for 10 seconds, which is what Apple does).
It would be ideal if pumps could do what Apple has done with their products. Everyone uses them, and there are various bits of information that can be spoken with Siri and such that are useful to those who would like something spoken but don’t need full accessibility, but then there’s also full-fledged accessibility built in to all their devices. When Apple did this it was completely unexpected, and the blindness community was floored the first time videos circulated of people who had never had vision in their life using a touchscreen device effectively.