Crossing the “yet”
Ed Roberts was an amazing guy. We were both on the TASH board and I got to spend some time with he and his son (pictured). Click on his name and see his incredible accomplishments. Ed was into action, not words. He was asked to be one of President George Bush’s “1000 points of light,” which he declined calling it Bush’s “1000 points of hype.” When he died, his wheelchair was donated to the Smithsonian. One of Ed’s quotes was:
There are only two kinds of people in the world: the disabled, and the yet-to-be-disabled.
This past year, my husband has had some heart issues and I’ve struggled with sciatica. Because my back pain’s not going away (even though I’ve had the lumbar shots, physical therapy…) we decided we needed to move to a ranch house.
And true to Ed Roberts’ prediction, I have crossed over the “yet” and am now starting to see the world from the “disabled” point of view.
Of course I’ve always seen what worked and didn’t work for Aaron, my son with a severe disability. But even with that knowledge and experience, now it is more personal. It is me. And it is shocking.
Boomers and Housing “thought leaders”
First of all, the housing market is filled with two stories; split, tri and quad levels but few ranches. The ranches that are available were built in the 60s. So they have old plumbing, bathrooms the size of postage stamps, and some even have steps. Yep, steps to get to the one-floor plan.
As we boomers age there is a scarcity of accessible housing. Sure there are some new patio homes but they are pricey and often in “mature” neighborhoods. Sure there are condos and apartments with elevators in crowded senior high-rises. Sure there are retirement communities which are basically segregated facilities–beautiful, but still segregated. Isn’t that what we have been fighting against for the last 30 years?
So, what to do?
Next week my husband and I are putting our multi-level condo up for sale. We figure in this market, it is wise to sell first and then buy. But as we go through potential houses, we are not finding anything appropriate. Where is the diversity? Where are the neighborhoods where ranches are mixed with multi-level houses? Where are the neighborhoods where seniors and young families can live together?
Universal Design has been around for a long time, where are the houses built with this concept? Why have the builders not used state-of-the-art thinking and technology?
I wish Ed were still here to make a joke and put things in perspective. I wish Ed were here to share his wisdom and spirit. Fact is, I just plain wish Ed were here.
And once again, I am reminded of my own aging and mortality. And that is another shock.
I never used to have friends who were dead.
In some ways I am lucky, I don’t carry many of the fears and superstitions of the previous generationI know about the difference between having a disability and a handicap (see post). I know how to advocate for my needs.
As I think about my own passage into the world of disability, I feel more prepared. People with severe disabilities have led the way. They have taught us to strip away all the frills and find the core of what we need. They have helped us learn about interdependence, adaptations and accommodations, systems of support, circles of friends, partial participation and community involvement.
They have taught us what is important–to be surrounded with people who love and care about us.
So, Tom and I will figure it all out. We will use the advocacy and problem-solving skills Aaron and others have taught us.
I remember when one of our relatives had a stroke. He would complain verbally and non-verbally, “I’ve only been like this for a short time” (I used to be independent and able to walk.) He would explain to everyone who would listen, “I didn’t use to be handicapped. I was an engineer.” (I had worth.) “Aaron is too close he might step on my foot.” (I’m damaged now, but I’m not like him, once I was whole.) He did not want to be near Aaron. He never put his prejudices into an actual discussion, he just always had this attitude about people with disabilities–and by god, he wasn’t one of “them.”
We have worked so hard to change people’s attitudes about people with disabilities. The next generation of children has had personal experiences with people with disabilities in the schools and community. But maybe the bigger lesson is that learning to be more tolerant about others, will make it easier for us to be more tolerant of ourselves. Hopefully, part of our learning about differences will ease the process of getting older.
We are all the same on the inside. We all need to be loved, safe, happy and give to others. That doesn’t depend on what our outer body looks like. That doesn’t depend on what side of the “yet” we are on.
I think these lessons will serve me well.
ps. Anyone looking for a great condo?
Please share your thoughts in the comments.
Are you offended with Ed’s quote, “There are only two kinds of people in the world: the disabled and the yet-to-be-disabled.” Do you think this discussion will help us as we age?
Keep Climbing–Onward and Upward
All the best,
This article is just speaking out the truth. I never really opened up my eyes and realized how true it is that there are only the “disabled and yet to be disabled.” As we grow older and age in life, we will have some type of way we end up disabled.
But the question remains, “Will we be handicapped?”
I know it sounds like semantics, but can you see why this makes a big difference?
There were times when Ed Roberts was “handicapped” and other times he wasn’t. It’s all a matter of having the support we need.
This article was an interesting way of looking at things. They categorized people as disabled and the yet to be disabled.
We all are doing the best we can, but just normal aging leads to the TBD!
This article helped me understand the concept of these two categories, the disabled and the yet-to-be-disabled. We’d discussed the idea in class but what you said here really opened my eyes to understanding. This concept of these categories could help the non-disabled be so much more tolerant of the disabled were we to really think it through. After all, everyone has advantages and disadvantages in life, and I think as we go on we realize this more and more and become more sympathetic in regards to each other.
So many people are afraid of getting the “disability” label. If we all just thought about it, it’s the same as getting the grey hair and the “senior” or “old” label. It just is. Thanks Rachel. M.
I’m sure you Grandma is so proud of you Paige. She probably smiles every time you think of her and remember her. 🙂
I really liked the article titled “Searching for Happy Ever Afters.” It was sad how the person doesn’t see the potential in life after so many losses, but it is important to realize that life does go on. Also, those who you have lost are with God now and are being comforted. I really like the quote, “Look at what you have left, not at what you have lost.” This quote shows that there is still happiness that can come from life, even if you have encountered hardships. This quote reminds me of my grandma’s death. I was devastated when she dies, but I know realize the good that has still come out of my life. Also, I know that she is happy with God.
Live life to the fullest is a great motto and you’re right–you can become a “yet” at any moment.
This article really opened my eyes. The two categories say so much in just a few words. You never really know what could happen, our lives can literally change over night. I like to live by “living life to the fullest” and the fact is you should. For one, tomorrow isn’t promised and for two, you can easily become disabled in some way.
I loved this piece, particularly the quote from Ed Roberts. The quote struck me because I think he is exactly right. You’re either born with a disability or later get one in life. A disability can be anything from down syndrome to having trouble seeing. Inclusion still shouldn’t be this much of a problem in today’s society, however there are many ignorant people out there. Great article!
Thanks Marissa. I like to think society is changing and Ed’s dream is moving forward. You will be part of the next generation of professionals who can make the vision a reality.
Wow!! Very interesting way of looking at this topic. I never even thought there were two kinds of people the disabled and the yet to be disabled. It made me think how I too along with the rest of the world never think that there is a possibility they could ever be disabled in some way. Truly was eye opening. I even shared this article with some friends of mine they were like this is a topic they never even would have thought of they weren’t offended by the statement, but felt more informed to what could be the tie breaker between being disabled.
You’re right Davin, it is an eye-opener. I remember the first time I heard it. It changes your way of looking at the world–more than the “live the most of every day.” Glad it made an impact.
I don’t see Ed’s quote offensive. Having a disability could be as simple as a broken foot. We are all human, and that means with time our bodies are going to worn down. We are going to have medical problems, and we may have to make adjustments in our lives for this disability. Some people are born with disabilities, and others are just yet-to-be-disabled.
Glad you “get” it Hannah. It really just makes sense. the people who get offended are often the ones who have poor stereotypical attitudes toward people with disabilities. It is a “not us” as opposed to a “we ” attitude.
This is a very interesting point of view. I like the comment Ed said about “yet to be disabled” because as we grow older there are many complications that may come along with it and there may have to be some living adjustments. My grandmother for instance has a hard time climbing the stairs now because of her aneurism. It is important for us to try to put ourselves into the shoes of others so that we can help make things a little better for them to live life and enjoy it at the same time. This is especially important for teachers when it comes to the educations of students, not just students with disabilities, but all students.
Ed Roberts was really an amazing man. If only we could all appreciate the strengths and diversity in the people around us–then we would all be richer and the world would be a better place. Thanks Maurica for taking the time to comment and share your ideas.
Mary, I’ve always loved your writing. And you keep getting better.
Thanks Josh, that’s a real compliment coming from you. I’ve been recovering from surgery so I’ve slacked off. Guess everyone needs a time to regroup. Hope all is well with you. Best always.
Great news! Yesterday we bought our new condo. It is a ranch and I think it will work well.
Bad news! Our current condo is still for sale. Anyone interested in a great condo?
Ed’s words did not offend me. But his response to being asked to be one of President George Bush’s “1000 points of light,” showed him to be ungracious. One never knows where such an invitation can take them or their cause. Politics plays games with peoples’ perceptions. I walk around Evergreen Lake with a best selling author. We walked for months before she asked: “Are you a Republican?” I answered with a chuckle: “Big time.” To which she responded: “But you’re so nice!!” Our friendship continues and just today she mentioned we could teach others about non-partisan coexistence. I share the story only to illustrate, that niceness can come from either side. Help can come from either side. When it doesn’t matter, why not be nice, too.
I don’t know all of Ed Roberts’ motivation, but I’m sure he had his reasons.
Hey, we’re into diversity–so all politics welcome. Each person has a story to tell.
Mary: You have a blog! A blog! And a great one, too! Congratulations. I have never seen it put like this before or ‘yet.’ What a great thing to learn. I am not offended at all by the concept. It makes perfect sense. I look forward to reading more 🙂
Thanks Alison, it’s been a long time coming. Johnny set it up. Many people like the “America the Beautiful” post the best. If you have any suggestions, I’d love some advice from veterans like yourself. Mary
Hi Mary. So it’s not just California then that has no diversity of housing? That’s truly is a shame. I noticed here in the Antelope Valley that there is no place that is small. If you are single or just a couple you have to go for either a family house or a large apartment.
The other lack of diversity is in the price range. I mean around here it hovers between $550.00 and $1,500 for an apartment or a house.
I think that lack of housing diversity is a product of the industrial era’s factory mindset. It assumes one size is good for everyone and all circumstances. Of course that’s totally bogus but that’s is how the mega corps work.
So good luck on finding a place that is right for you and your husband. Good luck on selling your condo.
One last thing, welcome to the world of the disabled. I hope your stay is a decant one.
Thanks Gary, there are so many mysteries in life. You are right, one size does not fit all. And, I never expected a “welcome”–but you are right again.
Sometimes I wonder if the housing and the furniture-makers just keep having the same “stinking thinking” running in the same social circles. The rooms get smaller–the furniture bigger. Families get smaller–houses get bigger. No wonder they have trouble in this economy.
Usually California leads the way, so I hope you find what you are looking for.