Self-Driving Cars, Alexa, and Ray-Bans: Exploring the Relationship between Disability, Independence, Technology, and Privacy

The year is 2050, and I am 59 years old. I wake up and tell Alexa to call someone to help me get up and get ready for the day. To be honest, maybe I don’t even call anyone. Maybe I have a robot assistant capable of doing all my personal care. Once I am up and in my chair, I decide that I want to go meet up with some friends. I tell my Google Home to turn off all the lights and the TV, and I lock all of my doors with my phone, or maybe we will use a retina scan by then. I get into my self-driving car and head off to hang out with my friends. Once we are there, I decide that I want to take some pictures. I can’t position my phone well, but I use my Ray-Ban Stories to take some hands-free photos or videos to remember the great day I had almost entirely independently.

I have never had a day like that in my life, but it is quite possible that within my lifetime, technology will exist that will enable people with disabilities to have a great deal more independence than we have ever had before. Attending events will be driven by whether we want to rather than by the availability of someone to drive us. Living alone will become remarkably safer with the availability of technology to get help reliably if we might need something. Technology may even replace the need to get an assistant altogether if robotic technology and artificial intelligence continue to develop rapidly.

And that would be an awesome thing. It would also be a terrifying thing.

Technologies of this sort rarely come without strings attached. Consider the Amazon Echo. How much does Amazon learn about your personal habits through what you utilize Alexa for? A lot. How much is Meta going to learn through your Ray-Bans? A lot. How much will the hypothetical self-driving car company learn about what you do by the locations you tell that car to drive to? Probably a lot more than you want them to. Are there technology companies that do not harvest a great deal of data? I am sure there are. Are they the norm? It does not seem to be that way.

I am not a conspiracy theorist, but I am a realist as it relates to data collection by large technology companies. While I do not believe that they are always intentionally malicious, I believe that they are profit-driven. Of course, there is nothing wrong with being profit-driven, but I don’t always know that I want to subject myself to particularly targeted advertising designed to influence me based on the data I have provided. And, on the off chance that a technology company arose that was intentionally malicious, the results could be devastating.

No one is forced to use any of these services. I do not currently use an Echo, for example. However, the scenario I outlined in the first paragraph of independence through technology will most likely come through companies large enough to invest in such ambitious projects. The companies that will create technology that enhances my life will likely be, or be closely related to, Meta, Apple, Google, or Microsoft. Therein lies the dilemma that will inevitably face the disability community as that greater degree of independence through technology draws tantalizingly closer and closer.

Digital privacy is good. Independence is good. How do we balance one good versus the other when they appear to increasingly be on a collision course?

Consider the following example. I have moved to China for work. I am a Christian and want to find a community where I can worship. I certainly can’t use my self-driving car to get to my church without being surveilled by not only physical watchers but also digital ones. Not only do I put myself in danger, but I put the entire congregation in danger. After prayerful consideration, I determine that it is probably better for me not to attend services and risk the well-being of others. My own spiritual walk suffers because I do not have the opportunity to be encouraged in person by my fellow believers very often. The technological tool could indeed get me there, but the technological tool also prevents me from getting there.

There are, naturally, ways to work around this barrier. Someone could pick me up and drive me traditionally to the meeting. On this balance, my independence level would decrease, but my privacy level would increase. I may decide that that is the best possible outcome in this situation. The sacrifice of some independence allows for fellowship with believers, a very great good. Independence is not, after all, the ultimate virtue that all life revolves around (contrary to many contemporary mythologies).

Another practical concern about my hypothetical future in China involves having friends over for dinner. In the kind of house I have described above, there would be smart devices all over the place, making me much more independent, a great good. My friends want to talk about things they have heard about Christianity over dinner. I am comfortable enough with these people that I will willingly reveal myself as a Christian, but I am concerned about what will happen with the data harvested by my own devices. As a result, I become nervous and hesitate in sharing my Christian faith, a decision that may have eternal consequences for my friends.

So what is the alternative to this solution? Do I create my own digital “safe room” where there are no devices? Do I soundproof a room in my imaginary house or apartment to have conversations I don’t want my devices hearing? My friends might think it is a little strange if we can only have certain conversations in certain rooms, but I may decide to do that. Do I simply not invite people over to the house and go elsewhere? That is possible, but not only does that seem less hospitable, but many spaces are not wheelchair friendly. As a wheelchair user, it is often more comfortable to invite people to a space that works for you rather than having to go to a space that may be less accessible.

I have used dramatic examples intentionally for illustrative purposes, but these situations can be less directly perilous and still serious. Many people have concerns about advertisers harvesting their information. Nothing terrible will happen to someone subjected to targeted advertisement about their favorite author’s new release, but the principle behind it remains disturbing for many. We like to choose the content we consume, and this type of targeted advertising contributes to creating echo chambers and information funnels. In fact, an argument can be made that these practices are major contributors to the polarization we see in our society on virtually every issue.

These questions are very real and are worth considering.

At this point, some readers might consider all of this to be conspiratorial. They may have more trust in big technology companies than I do. I respect that position, but I urge you to at least recognize the basic fact that technology can impinge, even harmlessly, on a person’s privacy. Even if you do not believe that Meta does anything harmful with your information, at least acknowledge that they have records of a great deal of your information.

The fundamental difference between many people reading this and myself is that disconnecting from technology will not impinge on your independence in the same way it might for me. You may not choose to have a self-driving car, but you can drive your own car. There is a luxury to being able to protect your privacy while at the same time maintaining your independence. I can choose to never talk to Alexa, but I cannot choose to need to have a way to call someone if I need assistance when I am in bed. It is a lot more convenient and cost-effective to perhaps live near people who also need care, share the cost of staffing, and be able to use the Echo to call night staff in the area. There is a certain benefit to not needing to figure out a way to get a hold of someone when you are functionally immobile.

I don’t write this for sympathy but rather to try to help you gain an appreciation for the dilemma that exists when privacy and technology come into conflict. We all make compromises related to data privacy, and I am no different. I post on social media more than a lot of people. I voluntarily put a great deal of information out there, but I do that for fun. I like to tell you when I find a great quote or go somewhere cool. I could stop doing that, and my life would not really change all that much (although it would arguably be healthier, but I digress).

The critical question I am trying to raise here is that we are looking into a future where life could be remarkably different for people with disabilities. It could be amazing. There could be so many things that enhance independence, and that would be life-changing. Nevertheless, we cannot afford to be naïve about the costs of this technology and must be very careful how we implement it in our lives as people who will likely be target consumers.

Furthermore, this is not just a discussion for the future, either. I was motivated to write this article as I am considering purchasing Ray-Ban Stories. I used to enjoy taking photos with my digital camera, but I can’t hold it really anymore. While the cameras in these glasses are regrettably not excellent at only five megapixels, I am more interested in the fact that this would be an opportunity for me to do something I enjoy. They have a voice control feature that I could utilize, which is incredibly cool. Like most things in my life, it does not have to be perfect, only possible.

If you read very much about these glasses, you will learn that they were created in partnership with Meta and are highly integrated with a new app they have created. It is not an understatement to say that you would be literally giving Facebook a look through your eyes. The amount of metadata they could access is kind of crazy.

You can see the trade-off here. Most people would probably say to just take photos with your phone or purchase a separate digital camera. That is not a practical option for me at this time, so the question persists. How do I use them? When do I use them? Do I create a separate Facebook account (technically against the terms of service) to link to the glasses to avoid giving them as much unintentional data about myself as these glasses will inevitably collect?

For most people, this is probably not a debate. If you have the concerns I expressed above, you would simply not purchase them, life would continue as usual, and you would take sweet pictures with your phone. For me, do I compromise somewhat, make accommodations to be as practical and private as possible, and go for it, or do I pass altogether and remain reliant on others to document the places and things I want to take photos of?

I am leaning towards purchasing them, with some practical precautions to try to limit unintentional data collection. However, the fact that I even have to wrestle with this question on a relatively small issue should encourage you to think about how amazing technology can be and also how terrifying the consequences of technology can be. We must think seriously about both if we want to proceed in a healthy and humane direction.