0:07
My name is Carmen
Meet Carmen
0:09
and I'm 38 years old.
0:13
And I became quadriplegic
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due to a spinal cord tumor from birth.
0:25
Without my PCAs, I would be lost,
0:29
not be able to live independently.
0:34
The best part of my job is knowing
0:36
that I'm going somewhere to help someone, you know,
0:41
and waking up in the morning
0:44
knowing that I'm changing someone's life.
0:45
My name is Rob, I'm 40 years old
0:49
and I have cerebral palsy.
0:50
I got on the PCA program when I was 18,
0:54
and before I got on the PCA program,
0:56
my parents were totally responsible for my care.
1:01
And, you know, by the end of the week,
1:04
we'd kind of be at each other's throats,
1:08
as parents and children are,
1:12
but when I got on the PCA program,
1:14
it changed the nature of our relationship
1:17
because they knew that we could go out to dinner
1:21
and that fact is
1:22
that I could go back to my own apartment
1:24
and they could go home and know
1:26
that they didn't have to worry
1:28
about how my needs were going to be met,
1:31
that I could get into bed and be able to get up
1:35
and get going to work the next day,
1:37
and it takes a lot of stress off them,
1:40
so now they don't have to be in that caregiver role
1:44
and we can develop more of a friendship.
Pat
1:48
My name is Pat.
1:50
I'm 66, and I've got cerebral palsy.
1:56
I can't cook, wash myself, get dressed,
2:03
so that's why I need them.
2:05
She is very good at giving directions,
2:07
how she likes things.
2:08
She has certain ways of doing anything
2:11
from, like, cleaning to personal care.
2:14
And she's very good at telling you what she wants,
2:17
how she wants it done, when she wants it done,
2:19
if she wants it done.
Anne
2:21
My name is Anne and I'm 63 years old,
2:24
and I have a form of muscular dystrophy
2:27
called Charcot-Marie-Tooth disease,
2:30
and I've been in a power chair for about 25 years.
2:33
August of 2005, I, all of a sudden, could not stand
2:38
to transfer to bed and back into my chair again.
2:43
And, you know, I didn't know what to do.
2:48
And as far as I knew and as my doctors told me,
2:52
the only choice was a nursing home.
2:55
I had feared going into a nursing home
2:59
all my adult life--
3:01
the loss of privacy, sharing a room,
3:06
personal care, the food, you know, that kind of thing.
3:10
A friend put me in touch
3:12
with Boston Center for Independent Living.
3:16
They told me, you know, "You could live in the community.
3:18
"You could have your own home again.
3:20
"You could hire your own people to help you
3:25
and manage the physical things."
3:29
Finally I felt sort of empowered again
3:32
that I could do this to get out.
3:35
Anne is, um... wonderful.
3:40
I... the minute I met her I felt a bond,
3:43
I felt that we were going to get along,
3:46
being of the same age.
3:48
And as I got to know her, we've got a lot in common.
3:55
We have the same beliefs on people with disabilities
3:58
and how they should be treated,
4:01
and she's kind and she's friendly
4:04
and she's honest and she's patient,
4:12
which is one of the most important things.
4:14
She's very patient with me,
4:15
because I'm still in the learning process.
4:17
I work for the Boston Center for Independent Living,
4:20
and I would not be here working for BCIL
4:24
if I did not have PCAs that were reliable
4:30
and able to come and get me up in the morning
4:32
and get me going.
4:34
Being a PCA is a tough job
4:38
because you have to be able to care for someone,
4:45
but at the same time,
4:48
you need to let them, the person, be independent.
4:53
Each person is really very individual
4:56
and needs very individualized care
4:59
that only that person can direct, can tell you.
5:03
"This hurts, that doesn't work for me," whatever.
5:07
And, you know, to listen,
5:10
because the person knows themselves the best, obviously.
5:14
My name is Eddie, I'm 16 years old.
Eddie
5:17
I was born with a rare muscular disease
5:20
called arthrogryposis--
5:23
I think that's how you say it.
5:25
In my case, my sister is my PCA.
5:28
She helps me brush my teeth, take showers,
5:32
transfers me into my bed, helps me get dressed,
5:36
all that stuff.
5:37
The first one, I sort of was stumbling around a little bit
5:42
about, um...
5:45
Well, it felt a little intrusive, sort of,
5:47
to be asking someone, you know,
5:50
"What are your references?
5:51
"What is your experience?
5:54
"Do you know how to use a Hoyer Lift?
5:56
"Are you willing to take instruction from me?
5:59
"Are you... you know, you realize
6:01
"that this will include a lot of household tasks
6:05
"of light cleaning and dishes, cooking,
6:08
you know, changing the bed, that sort of thing."
6:14
And, you know, to explain the job as I see it.
6:19
And it was a little bit awkward,
6:21
but now I've really got a pretty good sense
6:23
of what it is I'm looking for
6:26
and have done pretty well so far picking it out.
6:33
The first thing that I ask,
6:35
if they have had experience working as a PCA.
6:40
Also, I let them know that I'm their boss
6:44
and they are not hired by the agency,
6:47
that they are hired by me.
6:50
When I first started with this program,
6:55
I, uh... I had PCAs.
7:02
And they thought that I wasn't their boss,
7:09
but I am.
7:10
I need to know in advance if they're not going to be here.
7:14
I need to know if they're feeling ill
7:17
as soon as possible so I can try to find someone else.
7:21
But really all the PCAs I've had
7:25
have been wonderful women
7:27
and I really enjoy knowing them
7:31
and sharing my life with them.
7:34
They're what make my life possible.
7:38
And I am... (chuckles)
7:40
everlastingly and profoundly grateful to them
7:46
to be free again, to be out in the world again,
7:50
to have my life back.
7:54
And they are what make that possible.
7:57
Trust is very important
8:00
due to many incidents that I had had in the past.
8:08
For example, stealing money from me,
8:18
writing hours that the person never worked,
8:25
and leaving me in the chair for hours.
8:30
Trusting my PCA is the most important part
8:37
in my life.
8:39
If I didn't have the PCA program,
8:41
I'd be probably living in a nursing home.
8:46
Once I realized that the PCAs that I had at the time
8:51
were going to work out and that they were reliable,
8:54
then I could relax and just enjoy the fact
8:57
that I was, you know, in my own accessible unit
9:02
and could come and go to work
9:05
because I had transportation--
9:08
you know, the bus and the train, near me--
9:11
and I could come and go as I wanted.
9:14
That... then I knew that I was truly independent.
9:19
They just are the extension, really, of my arms and legs.
9:26
And it's a very personal relationship
9:30
and to say that they're useful
9:34
would just be a gross understatement.
9:36
They're just... they're just everything.
9:40
It's just a vitally important function.
9:42
I couldn't live my life without them.
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