Adapting to Never-Ending Changes: Systems Challenges

The title, “Adapting to Never-Ending Changes: Systems Challenges,” on a off-white background with blue blobs on the top left and bottom right corners along with a navy outline blob overlapping.

Recently, I have been experiencing a major change in how I live my life as a deaf and disabled person. I got a new cochlear implant (CI) processor and hearing aid that link to my CI. However, I did not actively make this decision. 

I have been fortunate to have a government who supports a CI program that would be covered my government healthcare since I was seven (7) years old. For over 17 years, I had a cochlear implant on my left ear that experienced profound hearing loss (essentially, I don’t hear anything on my left side). I would have never gotten an opportunity to get a CI due to financial reasons so this program really did provide me the opportunity and experience to hear way better than my hearing aids.

Now, that is a lot of years and technology has changed so much over the timeframe. After 11 years of having a specific processor, I got upgraded to the next product line covered by my government. This change was not significant other than newer technology and an external assistive device that would allow bluetooth. Now, six (6) years after that upgrade, I was informed that I was getting a new upgrade, specifically the newest product line that my company provides.

This new upgrade is quite significant. From bluetooth being part of the device to new programs that integrated artificial intelligence (AI), it had all the new integrations that I never experienced. While I appreciate the access to the newer technology, I am struggling. 

Due to the upgrade, all of my assistive devices became obsolete with my old processor. I no longer had a headset for virtual meetings by missing a microphone and I no longer had an FM system that would help me participate in in-person activities. All because I am a CI and hearing aid user. If I just had my CI, I would be able to get an FM system that would act like my headset through the accessories coverage. However, my government allowed hearing aid as an accessory and that was more important than an FM system in terms of transition and cost. 

While it can be seen as positive change, it causes so much internal turmoil for myself. From navigating private and public healthcare for paperwork to obtain a new FM system to adjusting to a CI that requires a different way of listening, to controlling my devices on my phone (I forget my phone often so it is difficult), I have been experiencing quite a transition. It sucks, especially since before the changes, I finally felt like I was on track with my CI and it felt like my own. Now, I am starting over again, I am learning all over again. 

Unfortunately, this is part of living with disabilities, things can change suddenly and you just adapt and hope you will figure it out as you go. However, government processes and policies make it incredibly difficult to navigate, making me question about giving up so many times. From how long it takes to the amount of paperwork I have to do including asking my healthcare professional time to write something when they don’t have a lot of time to start with. This happens in all government programs and processes including government benefits and they are not set up to be accessible and inclusive to the people they intend to serve. 

Four (4) ways changes can impact you as a person with a disability

The changes can really impact you in all levels of your life. Some of the areas that can shift your ability to adapt when something about your disability changes are

Physically

Change is already exhausting whether it is from excitement or concern. If you have to redo how you move or retain information utilizing your senses, it is physically draining to learn. The transition process can suck short-term until it becomes easier and part of your daily routine.

Mentally

Mental exhaustion tends to already exist in a society that is not accessible to you. Adding change to the process can make it more difficult to navigate. It may be time to consider what you have to do and what you could do based on the lower number of spoons you have.

Technology

If your assistive devices have changed, it can really affect your level of independence and ability to do the things you used to be able to do. It is frustrating and disheartening to know that the change forces you to have to reconsider what you are able or not able to do until it is resolved or at the place you are comfortable with. If you have to go through funding or insurance processes, it is an extra task of uncertainty and waiting that can put life on hold.

Choices and Freedom

Choices and freedom mean differently to everyone. The ability to choose and the freedom to change if needed can be important to people. For disabled people, that may not be there for us due to limitations set out by insurances, governments, location, and our financial ability. Knowing your choices are limited can put extra time and energy into finding ways to make it work or finding the tools or resources to make what you need happen. Just like with assistive technologies, life tends to be put on hold a little while that gets sorted out.

Change is always hard but for people with disabilities, the system is set up to make it more complicated. The systems put a price on our tools and needs to determine whether or not it is worth it. If it is not worth the cost and benefit analysis or fit the expectation imposed onto us, it is left to us to find it. This affects our quality of life and ability to cover basic needs which includes what we are striving to access. If you know someone who is going through the process of getting what they need to have a better quality of life and access to life’s activities, be mindful that there are limitations imposed on persons with disabilities that are creating these barriers, not the person who needs the support.

Amanda