Where are The Advocates

by Kevin Nuñez

Hello readers as always, I wish this brings a smile to your face for a few minutes a day. This blog post has a very specific target aud ience, if you are or know someone living with a developmental disability. Please share this with them.

To my fellow Advocates:

Allow me to introduce myself my name is Kevin Nuñez  I’m an individual living with Cerebral Palsy. I use a wheelchair as my primary tool to live my life. Without the help of a caregiver, I could never get out of bed or get dressed in the morning. I am writing you this because I know some of us feel like people are talking are talking “AT us” instead of “TO us” there is no doubt this past year has been difficult for us all I for one have not put on my shoes to go out of the house over ten times since the start of the covid-19 pandemic in March 2020. Here is a fact the world is changing and things will never go back to the way they were. I know how scary this is, but we cannot have our life lived for us. We have our own voices and we must not be afraid to use them!

We all know people with disabilities who cannot speak for themselves, so we always remember that we are representing more than just our interests and whatever disability I diagnosed us with. We must not isolate ourselves to only those who think like we do, that is not how you affect change. You must adapt to new surroundings, even if their surroundings are virtual. Everyone will always prefer an in-person meeting, for the time being, that is not possible. You must not be afraid to sit behind our webcams and let them see our faces. Our stories matter. Our lives have a value like everyone else’s. We’re always told “No” and “can’t” then we adapt to any situation. This is just another situation, only we make a difference.

Policies will be and have been made to help create “The New Normal.” Advocates regardless of their disability must be at the table when this is taking place. You must be part of all covid-19 relief efforts if lawmakers do not hear from our population we are the ones that will suffer. How many of us are still waiting at home to get the first vaccine injections. It doesn’t matter who you voted for this past November, our community is still the least represented and underserved. Disability issues should never be a Democratic or Republican issue. These are just two examples of how lack of action from us will ruin the lives of so many others.

Why is it that in a video conference of 12 people only two at the most have disabilities? We must share our point of view. The amazing parents who sacrificed everything for us make up five of the 12 people. Even though we individuals are always going to be eternally grateful, you must let us grow and make our own mistakes like any other child. Again, if your child cannot speak for themselves, other individuals who understand the struggle will be their voice. I know because I see it every day. The last group of people sitting at this table are some combination of provider agencies. These agencies take great care of their clients, but without us individuals, they would be out of business. Realistically, however, there will always be someone who needs care, they’re in no danger of going out of business. Their focus has become to avoid risk and cut costs as much as possible. Advocates must remind them that the priority must be on us not to the very effective bureaucracy. Checks and balances are critical to a well-run system of care. The quality and development of life should always be the overall goal.

Legislators, family members, and providers are the pillars of the disability service industry that should hold us up. Have you ever heard of another industry where the consumer is not directly consulted? They need to be coming to us, not the other way around. I know I’m not alone. You are not alone. We can and must work together. The Americans with Disabilities Act (ADA) broke a lot of ground that doesn’t mean it solved all the problems. We know what the problems are because we live with them every day. The future is now, and we must be part of the change.

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Disability in Focus