This vlog explains what will eventually happen when you don't accept your disability and it's effect on those around you.
Transcript can be read here.
I was asked my opinion on a Facebook discussion about interpreting for the DeafBlind, I couldn't believe what I was reading! Here's a rewrite of that post (not naming the group or the source).
"Should DeafBlind people tell their SSP or interpreter that they are sick or contagious? Do interpreters and SSPs have the right to protect themselves and refuse to do the assignment? Even if it leaves the DeafBlind person without communication access and more?"
What were you Expecting?
I have one sentence for y'all!
You signed up for this!
What were you thinking when you wanted to be an SSP or interpreter for the DeafBlind?
An SSP's job is to guide, inform them of their surroundings, people and noise happening, some minor interpreting, and more.....depending on the client - this is mostly hands-on.
As for interpreters if you're worried about getting sick - don't accept the assignment in the first place, or stick with Deaf-only clients. Don't arrive to your assignment only to abandon them.
Many professionals know what they're getting into when they read the job description - nurses, medical assistants, dental assistants, physical and occupational therapists, personal care aides and so on and on. Why not SSPs and DeafBlind interpreters?
The Suggestions & Excuses
Here's a list of some of the suggestions and excuses folks gave:
Let me answer those:
Preparation is the Key
Now, I don't think it should be required that the DeafBlind client tell their SSPs or interpreters that they are sick, but I know many would be courteous to do so. I would personally tell my SSP if I have or had a cold or other symptoms or I would have cancelled any appointments and outings if I'm still sick.
In the case of the Deafblind client needing to go to the doctor or hospital because they're sick - you know where the assignment is and can prepare beforehand (take extra vitamins, wash hands more diligently, or just turn down the assignment).
It's hard to pinpoint that you got sick directly from your DeafBlind client - there are other people, the environment, the bathroom door you touched, the handrail, and so many more. Don't stick it on us eh?
What you're Insinuating
It's my opinion that the fact this discussion even came up just isolates the DeafBlind community even more.
There are approximately 30,000 to 40,000 adult Deafblind folks in the United States, the number of DeafBlind served per year vary from 5 to 80+ based on the 30 states who responded to inquiries on services provided.
5 to 80+ DeafBlind clients served in each of the 30 states!
Out of 30 to 40 thousand "Deafblind" people?
I know that not all deafblind will require SSPs or even interpreting, but still that's a very low number of SSPs. I also know that many DeafBlind are independent and can and are fully capable of managing on their own. Then there's the small factor that don't even know that SSP services exist and rely solely on family for what little information they need and spend the rest of the time in isolation. (Then there's another group who have refused to do anything except mope alone about being deafblind - but not going there).
My point is, those DeafBlind - the independent ones, the ones with SSPs and are out participating in life to the fullest - face a lot of resistance from the hearing-sighted world (and even the Deaf-sighted) and now these people who are supposed to be working for us, our allies, are questioning whether to dump us or not?
Seriously, that's how I see it.
You signed up for this, take precautions and grow the hell up.
Deafblind Awareness week is almost over and I hope you're learning new things about the Deafblind community. If you want to read more, check out the #DeafblindAwarenessWeek hashtag on social media.
Now if you have been following my website or know me - you'll know I'm always expressing that Deafblind people can be independent and live fulfilling lives on their own.
But, there are still barriers to our independence and I'll list a few:
Lack of Support Service Providers
Support Service Providers (SSPs) are trained individuals that accompany the Deafblind person and be their eyes and ears to access their environments and make informed decisions. SSPs provide them with visual and environmental information, sighted guide services, and communication accessibility.
Understand that SSPs do not do anything FOR the Deafblind person, for example - in the grocery store, the Deafblind client wants to get apples, the SSP will guide them to the apples, and the client holds up an apple and the SSP describes it (no bruises, spots, etc.) and the client bags it. SSPs are not Interpreters either - they can interpret small verbal exchanges but not for important events such as medical visits, signing a rental lease, and the like - a professional interpreter would need to be hired.
As I said in the title, there is a lack of SSPs available nationwide. A study done in 2006 estimates there are about 1.2 million people that have combined vision and hearing losses. I couldn't find any current data but in 2006 only 28% of states ahd any level of SSP services. I'm sure this number is larger (Oklahoma just passed a SSP funding law), but I doubt it's enough to cover a million Deafblind clients.
Now, SSPs are not exclusive to Deafblind people, they can be used for Senior Citizens who cannot drive anymore due to sight and hearing loss, Blind hearing clients can benefit from SSPs to guide them around unfamiliar places as well as get audio information on their environment.
So, the solution:
Barriers to Health Services
Many Deaflbind have limited access to quality Healthcare for a variety of reasons. This is a very long list so I'm going to bullet point them:
The solution? Provide better sensitivity training throughout the hospital and medical service community. Provide a Medical School course in the various disabilities and their preferred communication and interaction methods. Have more ASL interpreters and tactile interpreters on contract in hospitals. And finally - stop being stuck up jerks. (My personal opinion). Read more in my article.
General Lack of Access Everywhere Really
There's a huge lack of access for Deafblind people in every part and stage of their lives. I believe the number one cause of this is the public's view of Deafblindness.
As soon as a person finds out someone is Deafblind the majority of the time they instantly think of Helen Keller and "total deafness and total blindness" and forget that Deafblindness has a wide and varied range. The other thought that often occurs too is low expectations - they're hellpless and can't do anything for themselves. I once showed up at a doctor's appointment alone and they asked where my caretaker was. Yeah, I wasn't happy with them.
So because of this attitude, many barriers happen:
One sad fact about all this lack of access and socialization for the Deafblind is that it leads to depression and other mental health issues. It's hard staying positive when there is limited contact with the outside world, and when there is interaction - those people are treating you as if you're incapable of anything.
If you suspect a Deafblind person, or anyone with a disability, of having depression or any other mental health issues, please read these helpful articles
More awareness and training is the best solution. But this takes time, effort and monies that are usually not there. But I believe it starts with the Deafblind people themselves - they need training on empowerment, self-reliance, and how to speak for themselves. Only then can we educate one person at a time, or as a group and wake the public up.
Another solution - stop the "hero" mentality and quench the need to rush to someone's aid (and filming it) for your own self satisfaction or gain. People with disabilities are not your pawns, we are people too and deserve (and should demand) respect. If you see them, simply ask "everything alright?" and if they say it's fine - leave it alone. If they do need help, ask how and help with the one request. Do not assume because they had trouble with one thing that they'll need help with everything else.
I saw this post on Facebook the other day that sums this up perfectly:
I hope I gave everyone food for thought and a change in attitudes.
Today marks three years since I got a kidney transplant.
June 24, 2015
So, I wanted to post the Facebook interactions before, during and after to show the progress:
* January 7, 2013 - Nephrology Appointment - Kidney Function slipped to 16%
* August 6, 2013 - Registered on the Kidney Transplant list in
Tulsa (it's closer)
* May 13, 2014 - Nephrology Appointment - Kidney Function slipped to 15%, Creatinine is at 2.6 (Normal is 0.7-1.5)
* June 23, 2015 - They found a Kidney! Off to Tulsa
* June 24, 2015 - Surgery day 5am. Was told it will be 2 days in the ICU and then 4 - 5 days in a regular room for recovery
* June 25, 2015 - Moved out of ICU
* June 29, 2015 - Discharged from hospital
* July 15, 2015 - Wrote a Blog post on the experience
* July 27, 2015 - Kidney Biopsy done after Creatinine jumped to 1.8 after weeks of being at 1.6 (Results - no sign of rejection). (Have had 4 biopsies done to date.)
* July 29, 2016 - Signs of cellular rejection - first of 3 Antibodies I.V. transfusion - 8 hours to complete
* June 24, 2018 - Labwork every 3 months & Clinic visits every 6 months now.
Consider being a Donor
Please think about being a donor.
* Check off the donor option on your Driver's Licence
* Sign up at the Organ Donor Registry
* Volunteer to be a living donor at the American Transplant Foundation
* Share information
* Support the Organ Donation Network
Hey y'all! Sorry this is late, I actually thought it was Saturday - yeah it's been that kind of week.
Since I will be starting on the big de-cluttering jobs over the next few weeks, I wanted to prepare with the right mindset.
Preparing Mentally for De-Cluttering
Earlier this week I showed you the list of questions to ask yourself when you're cleaning up, but now I'm going to tell you how to prepare mentally for a de-clutter challenge.
Think these things over and over again while cleaning things out. If you just "can't part" with something, that's okay, set it aside and try again another time. If this becomes serious, please seek out help and advice for the "root" problem.
1. I have what I need in my life. Some hold on to extra items for fear of poverty, loss and sometimes regrets. They were once without, now they have the means to own things so they start stockpiling. The point you miss is that it doesn't help with the financial gain. You fear going poor again, yet you're spending all this money on things. Just think of things you need for the present, not for "just in case" or "I wanted this when I couldn't before" and so on and on.
2. Think of the present. We've all said "I'll use it someday", but that someday never arrives and we have stashes of stuff for "future projects", and "I'll fix it later" and it just sits collecting dust. Sell them or toss - you could use the money for something you want today.
3. I have the memories. Some people have sentimental and emotional attachment to things, which is fine if you ask me, but as long as those are happy reasons. Anything that stirs up negativity should be tossed - no ifs, ands, or buts.
But really, you have the memories, you don't need to keep a teddy bear from the 1984 State Fair 'cuz that' where you got your first kiss. Remember the kiss - toss the bear.
4. I have room. Sure, you may have room to store stuff, but try this, take a before picture, de-clutter the room, then take an after picture. See the space? Neatness? Feel less stressful?
As the video below shows - less stuff = more happiness.
5. I will follow through. How many times over the years have we collected clothes or old toys to donate and those bags and boxes sit in our garage or car for months before actually going out? Yeah, so schedule donation drop offs, classified listings, and dump visits regularly throughout your de-clutter challenge.
6. I'll reward myself. After cleaning a large room and actually getting rid of the stuff - give yourself a small reward: a meal out, a treat, or a move. Don't go shopping and get more stuff to fill in "the new space".
I hope these pointers help prepare you mentally for the big de-clutter challenge coming ahead!
Today's topic is close to home - I lived with Chronic Kidney Failure for many, many years until my transplant nearly 3 years ago. Even though there I am a lot better than I was before, I still have some days, or periods, of fatigue, nagging pain, or prolonged insomnia.
Here's some ideas how to keep our lives moving froward even when our bodies don't want to.
Staying Productive with Chronic Illness
Even if you don't have chronic illness or pain, we all have periods of being sick but cannot take a break because we're a parent, caretaker, or boss.
1. Remember you're not a burden
This was a hard one for me to accept, being sick and unable to do anything wears you down mentally too. You didn't cause the disease or illness, so don't blame yourself, or allow others to blame you as well.
If others believe that you are and have been outspoken about this - that's on them, not you (and you need to call them out on it too).
So, relax and recover and allow others to pick up the slack.
2. Give yourself time
Give yourself extra time to accomplish things. I do this in my freelancing work, I add a day to the deadline to allow for "down time".
We're so focused on what others have accomplished that we forget to look "behind the scenes" and see how long did it actually take them to accomplish it. Who knows maybe it took them much longer than you could do the same job, Eh?
Stop comparing and go at your own pace.
3. Make 2 "To-Do" lists
Many people create to-do lists for everything in their lives. I've suggested creating them on Day 6. We feel an urge to complete everything on these lists before we're satisfied.
I suggest you create two to-do lists - one for the good days and one for the "flare up" days. Maybe on the bad days do things that can be done from a bed or desk?
Even if the only thing on your to-do list is "take a shower" - you've done something.
4. Work with your Body
Remember I talked about working with your body's schedule on Day 15? Use this same method with your chronic illness. Work around the times your body is "uncooperative" and work during the good moments.
In my experience, sometimes I just cannot get up in the mornings, so I sleep in, waaay in. Then I putter around with coffee and food and then get some work in (like right now). Other days I can be up early, work all morning, but will need a short nap in the afternoons to recharge. When I was working outside the home full-time, I usually crashed in bed shortly after dinner - adrenaline and coffee was my subsistence through the days.
So, schedule around your illness.
5. Have a support system
If you've already delegated some of your work out (Day 9), maybe have them take on more on the bad days. Nevertheless, have a support system in place - friends and family who can come take the wee ones for a while, someone who can bring over a meal, take you to appointments, etc.
These supporters don't think you're a burden and are happy to help you out. Cherish this group.
Relax, the world keeps moving without you. It's perfectly okay to do absolutely nothing but recover.
That's it, take it easy, do some things you're able to, delegate the rest and stay positive.
Productivity Quote of the Day
"It does not matter how slowly you go as long as you do not stop" ~ Confucius